Before I was a sports writer, before I was a blogger, before I was a dad and a husband, I was a kid at Mahopac High School in Putnam County, N.Y. My life was sometimes good, sometimes bad. I ran track, worked on the newspaper, liked girls but never kissed one. Like most semi-geeks, I struggled some. Nothing terrible, nothing remarkable. I merely existed.
During that time, Mahopac High was blessed by the dynamic flash of light that was Frank Z., all-around good guy [Jeff’s note: Frank preferred, in the text of this article, that I don’t use his last name. For Google purposes]. Frank was one of those kids who belonged to most groups, yet attached to no singular one. He was popular, athletic, handsome, smart (if not overly studious). He was universally liked because, frankly, there was nothing to dislike. Were there an unambiguously good guy, he was it. The above photo, plucked from the 1990 Mahopac High yearbook, is definitive ’90s Frank—fun, lively, bursting with oomph.
I knew Frank best from weekend morning tackle football games at Austin Road Elementary School. We were all 16 … 17 …18, and 20 or so guys would gather to play rough, oft-brutal contests. I probably only lasted three or four times—frankly, I sucked. Frank, on the other hand, was the star. Because he held a regular job, he never played for Mahopac’s varsity football team. Had he, however, I’m quite certain the Ray Mahoskey Era (he was our team’s star running back at the time) would have never existed. I still remember those weekend sessions—Frank dashing around the field like a tornado. The kid was gifted.
Upon graduating, I lost touch with Frank. People come, people go, we move on. It happens. Then, maybe seven years ago, somebody told me that Frank, Mr. Energy, had been diagnosed with Multiple Sclerosis. I don’t recall when, exactly, I heard the news, or how I responded. But at some point Frank and I reconnected. Now, in 2011, I count him among my closest friends.
Frank symbolizes courage. And grace. And compassion. And decency. He has been in a wheelchair for years, but complains only when prodded, then prodded again. He wants others to be at ease, and detests any awkwardness that too often comes with disability. Last year, Frank and I co-planned our 20th high school reunion. Throughout the process Frank hedged on whether he’d be able to attend. Maybe. Possibly. I don’t know. Hard to say. Then, on May 15, he showed up, and stole the show. People loved the guy in 1990, and they loved him in 2010. It was remarkable.
Personally speaking, over the past half decade Frank has impacted my life as much as much as anyone. I find myself worrying about stupid crap, then think about the way he handles non-stupid crap. I bemoan a bad edit or one of my kids misbehaving, then I think about Frank, and the way he hovers gracefully. When I released Boys Will Be Boys a couple of years ago, I dedicated it to him. Easy decision.
Anyhow, I know The Quaz is focussed around celebrity, but screw it. Too often we step back from people with disabilities. We worry about how they’ll react if we probe, and we therefore turn the other way. Frank, however, has always been open in our discussions, and I wanted to know—with raw grittiness—what it’s like to suffer from MS, and how he has been able to stare down the malady with such determination and dignity.
Kick back. Grab an apple. This, I assure you, is a worthy read.
It is my greatest honor to welcome Frank to The Quaz …
JEFF PEARLMAN: When someone gets sick, or has something like MS or ALS or cancer, people tend to react by saying, in their most empathetic voices, “I can’t imagine what you’re going through.” We’ve talked enough that I can sort of imagine what you’re going through—but not in any sort of real way. So, Frank, what are you going through? In the most descriptive and precise terms you can turn to, what is it like having your level/stage of MS?
FRANK: Jeffrey, I was surprised to get your e-mail wanting me to take part in The Quaz; as I don’t think my story or MS situation is a great read. But as a friend I accepted your request to be part of the Quaz.
Let me begin by briefly describing what MS is and how it may affect a person. Simply put, Multiple Sclerosis is an autoimmune disease (at least medical science says so at this time) that effects the fatty tissues (called myelin sheaths) that surround every single nerve in your central nervous system. When nerve damage begins scaring is left behind—hence the Sclerosis part of the disease name. Multiple Sclerosis (scaring in multiple areas). Depending where on the central nervous system this disease decides to wreak havoc that is the part of the body most affected. Individuals suffering from MS can be challenged in their walking and even become dependent on a wheelchair, can have vision issues, bladder issue, slurred speech, hand dexterity can also be a problem etc. etc. It all comes down to where the scarring is taking place on the central nervous system, it shuts down signals that need to go though. Now that I have made everyone an MD let me get to your question …
I honestly don’t get a lot of “I can’t imagine what you’re going through.” At least not verbally to my face. But I’m sure people wonder to themselves “I can’t imagine what he’s going through.” I know when friends and family ask me “How are you feeling?” or “Are you managing on your own?” I answer promptly and with conviction that I’m doing well and plugging along. I immediately try to steer away from any conversation on how I’m doing or feeling. I just don’t want precious time spent with family and friends to revolve around me or the illness. I don’t give off a poor me vibe so I actually always mustard up enough strength to showcase the opposite. Since most people who follow your blog don’t know me personally I will answers your “what are you going through” as bluntly as possible.
I will paint as descriptive of a picture as possible, but even by doing so I will not be scratching the surface on the actual physical feelings or challenges that accompany this MS monster. Words cannot express the anguish. I want to begin by offering empathy to all your readers who have loved ones who are battling any type of illness. I’m not trying to downplay anyone else’s suffering because I know all too well that others are going through the same, if not worse. Let me begin by giving you an analogy of my MS being a freight train traveling downhill at mach speeds without any brakes. I have numbness that has obviously progressed over the years from the tip of my toes to currently my upper chest. It feels as though someone is giving me a great big hug 24/7 (not the good type of hug either). I will be totally honest in that the numbness is nothing more than really annoying. My spasticity (leg stiffness) is my biggest enemy right now; I haven’t had a good night’s sleep in well over five years. I often cramp up in the middle of the night (which can quickly happen by just rolling over or changing positions in bed), and it often feels like someone has just taken a vise to my lower extremities (calf, thigh, quadriceps). The pain is punishing, to say the least. I quickly attempt to stretch out the cramped area or massage it out if I can reach the lower limb involved. If that alone doesn’t ruin a good night’s sleep, I also need to get up and go to the bathroom at least 2-4 times a night. Those issues are my nighttime challenges.
Then come the waking hours of my day. My eyesight isn’t that great anymore, as MS ravages the nerve sheathing which affects my vision. My hands don’t always want to cooperate either, so writing can be a bit challenging. Bottom line: it sucks to be dealing with this (what sucks even more is when I think of my other MS friends who are dealing with even more dire circumstances than myself.). As the years go by I need to deal with new levels of disability. Every year I say to myself that if my current health and disability stays at its current level and doesn’t get any worse I’ll be just fine and can handle it. However year after year there is always a noticeable decline in my condition. Don’t know where it stops. I’m always looking for disability enhancements to place in my home to make my life easier and safety paramount. My quality of life has continued to decline at a steady pace over the years. I don’t know when I’ll finally say to myself, “I can’t do it on my own anymore and I think it is time for me to utilize a 24/7 facility to care for me.” The thought is scary, but I am a realist.
I was diagnosed at the age of 27. That I can possibly be in a nursing home by 40 is humbling.
J.P.: How did you find out you had MS? Do you remember the first moment when you had an inkling? The first exact moment when you knew for sure?
FRANK: Well, the first time the words “Multiple Sclerosis” were used to describe the issues I was having was December 7, 1998. After weeks of tests (MRI, Evoked Eyes potentials, blood work, etc), the verdict was in—Multiple Sclerosis. At the time they were just two words that I had heard in passing a few times, but for reason in my gut I knew it was not good; and my only question to the neurologist at that moment was “Is it debilitating”? (Why that only question blurted out of mouth—I don’t know) His answer: “It could be” That soundbite played in my head over and over and over again. My visit with the neurologist lasted another 20 minutes or so after he uttered those words, but to be honest I didn’t hear a word. I was still trying to get my head around the words Multiple Sclerosis. After the visit, I got in my car and I began to cry. I really don’t know why. Did I think I was going to die? Was I really that scared? How was I going to tell family and friends and would they treat me any different? Was I feeling sorry for myself?
Whatever the reason, it was surreal. If you know me, you know why I did not tell my parents until 2001 that I was dealing with a health issue. But once my challenges started becoming noticeable, I had no choice. I just didn’t want my parents to worry. They were older than average parents and they were dealing with their own health issues ever prior to my diagnosis. If I had the remitting/relapsing type of MS, I probably would have never told them.
Anyhow, I’ll never forget that day, and the the impact of those two simple words. Just devastating.
To answer the second and third part of your question; looking back over the years I can now connect episodes of weird and awkward moments that were actually the beginning of the illness rearing its ugly head. Multiple Sclerosis was showcasing itself a few times over the years (hindsight is 20/20) but symptoms came and went rather quickly. One major instance came at a time in 1994 I was dating a girl whose parents had a hot tub on their outside deck. We were in there together for about 30 minutes or so, yet upon exciting the hot tub I felt really lethargic and sluggish in my bodily movements (walking, my fingers not being quite fluid, vision was a bit blurry). Looking back those were symptoms of MS.
The first inclination however that something was truly wrong and that pushed me to go see a doctor was in September, 1998. My buddies and I have (for years) played pick-up football games in the fall corresponding with the NFL season. The first week in September also became our official football season. My issues began from the beginning of that first game—I started inexplicably falling to my knees after the first few plays. I took an opportunity to take a breather, but the next play came and the same thing was happening. After that second play of the game, I just couldn’t run anymore without falling so I decided to spend the rest of my time watching from the sidelines. The following week I attempted to play once again to no avail. I just could not keep myself from falling to the grass. I couldn’t for the life of me keep my balance or run in any way; I knew something was wrong. My friend’s dad was there that day playing ball with us and he said, “Frankie, you need to see a doctor about this.” I took his advice and went to my primary care physician, who did a full work up on me. All the typical blood-work along with a thorough check-up. He said everything was OK with his assessment, but his recommendation was to go see a neurologist, which I did. This is when the rubber was going to meet the road sort to speak, and I was approximately two months away from hearing my fate: Life sentence with MS (with no possibility of parole).
The craziness of this all was that I felt like I had life in the palm of my hands; I had a great career, great family and friends, I had a knack with the ladies, life could seriously not have been any better.
J.P.: What is a day in the life like for you right now?
FRANK: It’s pretty arduous. Nothing is easy—starting with my shaving in the morning, brushing my teeth, taking a shower, making myself meals, doing laundry, talking to family and friends. It may take me longer than the average person, but I have become very efficient in my own way. I am also blessed with working from home so I can be and feel like a productive human being. I go to bed between 9-11 pm and have my challenging evening of sleep, then wake up start the entire process all over again. I get up anywhere from 1-5 every morning. It’s actually insane when I think about it sometimes. I mean there are days when I ask myself “Is it Monday or Wednesday” or “Is it a Saturday or Sunday?” I can actually go through an entire day sometimes and not know the exact day I’m in. I now look at my computer clock at the bottom of my computer screen every morning just to make sure.
J.P.: For some reason we humans try and try and try to find the positives in everything. When someone dies—he lived a good life. When someone has cancer—well, it gave him perspective. We attribute things to God, both good and bad, when it often strikes me that, just maybe, life can fucking suck, and you getting MS while Newt Gingrich and Barry Bonds make millions of dollars is simply unfair, illogical blunt-force reality. What I’m wondering is, have there been any positive ripples from you having MS? And can you see God’s plan in it happening? Or, come days end, does it simply suck in all definitions?
FRANK: Believe it or not there have been many positives from having MS. Let me start with the immediate positive of new friendships that I’ve made. As you can imagine upon getting my diagnosis I was on-line as much as I could be to find out anything and everything regarding my new illness. During those long nights of diving into different MS sites I ran into a chat room regarding the disease. I immediately began corresponding with others and asking them what can I expect or what else could I do to help myself regarding my new MS diagnosis. All of my new friends where helpful even though we were all dealing with different stages of the disease. There were many nights that I was hopeful when chatting with a new friend and then there were nights I was completed deflated after chatting with a new friend. It was an emotional roller-coaster. I wouldn’t trade any of my MS friends for anything; we all still talk on the phone at least once a week and still share our lives together. Some of these friends have ended up in total care facilities, some have moved in with their children or loved ones, yet we still stay in touch and go through the ups and downs of this MS journey together.
Let me tell you about the biggest positive that came from my having MS. I began my life in a wheelchair in 2003 and it took some time to get used to it at home but when you don’t have a choice you adapt rather quickly. I was also lucky enough to continue working and doing it from the comfort of my own home. In 2006 my Mom was diagnosed with stage-4 lung cancer and my dad was diagnosed with stage-3 colon cancer. I didn’t shed light on this before, but stress is the worst thing for an MS sufferer. Stress has no positive effect in anyone’s life, but for an MSer it’s extremely detrimental. The two-cancer diagnoses was a double whammy and it hit me like a ton of bricks. I honestly didn’t know if I could do this (help my parents while helping myself), but I told myself “Game On.” This is no time to feel sorry for yourself, let’s get ready to do what we have to do make life comfortable for Mom and Dad. In the card game of life, one could say I was dealt three crap hands—my diagnosis in 1998 and Mom and Dad’s in 2006. These are the challenges that were dealt and I’m pushing my chips all in.
I digress: My Mom started declining rather rapidly, she was too sick to receive any treatment because her cancer was in a stage 3 situation and Mom had already been battling Myasthenia Gravis for the past 16 years which left her with little strength, at age 73, to receive chemo treatment. I used to talk to Mom every day and night while she was in bed not doing much of anything. She had little strength to even speak, but I knew through reading all the material Hospice left behind that even though loved ones cannot respond or carry on a conversation, they can still hear. I was telling her every day how she was the best mom two sons can ever have [Jeff’s note: Frank has an older brother, Vincent]. I was thanking Mom for all her hard work and the sacrifices she made to raise my brother and I. I told her the love she gave us will be passed on for generations. I would also go into great detail and tell Mom I was going to get better and start walking again … get out of the wheelchair and go to Italy and visit all our family and friends again. I’m not sure she believed it but I was expressing it as it was just a matter of time before it really happened. Anything to make her think I was going to be OK. I knew however Mom was worrying about me—here is her 33-year-old son in a wheelchair that she can’t care for him anymore. I knew this is what was on her mind because my brother was having his own time with Mom weeks before she became bed-bound and all she kept saying to him was, “Promise you will take care of Frankie, promise you will take care of Frankie.” I need to be honest—it’s choking me up and breaking my heart just expressing this to you.
On Sept. 10, 2006, Mom woke up from a very long sleep and she motioned to me (because she couldn’t speak at this point). She wanted something to eat. I made a small amount of oatmeal and cut up into tiny pieces three pieces of canned peaches. I was able to feed Mom and she went straight to sleep with not a word spoken. Throughout the night I would go into Mom’s room and give her morphine and anything to make her comfortable. My bedroom was literally next to Mom and Dad’s room; only a wall separated us. It took me about 30-40 seconds to get in my wheelchair and go next door to Mom. Dad was sleeping on the couch at this point. Before Mom lost the ability to speak she would call out my name numerous times a night to go into her room to get her some water, give her medicine, or even to just scratch her leg or something, whatever it was I was at her beck and call.
Anyway, the morning of September 11 at 4:00am … I hear my Mom call my name—”Franc!” I shoot up out of bed and as quickly as I can get into my wheelchair and dart for her room. I knew it was serious because Mom hasn’t spoken a word in more than a week. I roll into her room and immediately grab the morphine to put a drop in Mom’s mouth and she shakes her head “No” at me, I said, “Mom this will help you,” but she shook her head again and then within seconds all I could hear was a slight gurgling from Mom, then Mom actually smiled at me and then Mom left me. I wasn’t even in the room 20 seconds before she passed. She wanted me to be there, she really did, she called my name and gave me that gift. I saw her take her last breath … never to be forgotten.
I called out to Dad to come into the room and we both wept for the wife and mom we both had lost. I called my brother at 4:15 and he immediately came over. We all spent time with Mom before the hospice nurse and the funeral director had to take over. Losing a parent is not easy, constant reminiscing in my mind, replaying the fun and love from over the years brings both a smile and sadness.
Now that Mom had passed spending time with Dad was so important. I would do the same things with Dad months later that I did with Mom—talk about the good times, all he and Mom did for my brother and I. Letting him know that me and Vincent knew and appreciated all the sacrifices they made for us. It was seven months later, on April 17, 2007, that Dad passed away. I remember April 16 really well as I knew Dad was getting ready to let go because all he could do was breathe through his mouth and all I could do was give him morphine to make him comfortable. I stayed up with him, rubbing his legs and talking to Dad until 3 o’clock on the morning of the 17th. At that time I was so exhausted and cramping up because of the positioning of his hospital bed (which was now in our home) and my wheelchair. I had to lie in bed, even if for just one hour, to stretch out my legs so I could be by Dad’s bedside again. My worst fear was to not be there to see Dad take his last breath, like I did with Mom. I was so so afraid of that.
I woke up, looked at the clock in my room and saw it was 7 am. I couldn’t believe it—I slept too long. Was Dad still with me? I was scared to think he had passed and I wasn’t there for him. As soon as I hit the wheelchair I was able to see Dad was he was still with me. I was able to breathe again. The rest of the day was spent by his side just loving him as much as I could and he still held on, but the whole time (as I did with Mom) I gave him permission to let go and be at peace. I knew in my heart of hearts he was hanging on for me. Here is his son, in a wheelchair, who he needs to leave on his own. I’m sure it was breaking his heart. It was exactly 5 pm when a Hospice nurse who hasn’t seen Dad in months (she was no longer his caregiver because she was placed with another patient) rang the doorbell. She said she was in the area and wanted to pass by and say hello. She said while she was here she would check on Dad’s vitals. It was no sooner that she took out her stethoscope and starting listening to his heart, she asked me “How far is your brother from getting to the house?” I asked why and she said to me Dad wasn’t going to make it much longer. A little over 10 minutes later I saw Dad take his last breath.
It was Dad’s plan for me not to be alone when he passed. It was 15 or so minutes after Heather had walked in the door that Dad passed away. He cared for me until the end.
Jeffrey, to answer your question, “What positive ripples have come from having MS?”—here’s another one. I would say being in a wheelchair at this time of my life with this dreaded disease allowed me to be 1) at home taking care of my parents and 2) see both my parents take their last breaths. I can only wish for everyone to receive that same positive gift. I mean if I were a healthy man I would have a career in some office, would probably be married with children, and live in my own home. Would my parents be in a nursing home? I would never want that. When we are brought into this world as a baby, if you really think about it, it is strictly pot luck on the set of parents that you’ll get. They are responsible for protecting you, feeding you, changing your diaper, giving you a bath, making sure you’re clothed properly. I was able to pay that favor back. It is not easy taking care of sick parents, when all their basic life needs depend on you.
Hospice was amazing, but they could not be here 24/7. So I had to protect them, cook for and feed them, I had to empty their catheter bags, I had to change their diapers, I had put clothes on for them. It’s interesting how life comes full circle sometimes. I hit the jackpot in the parents department and I hope they both felt the same in the children department.
Is this God’s plan? Do I believe that? I’m not sure how to answer that. I was brought up Christian, received all the sacraments, and was an altar boy for six years, Catholic school for 8, but somewhere along the way I lost touch with my religion and God. I’m going to be honest here—I’m not sure about there being a God’s plan. I can’t bet the ranch there is a God, but I can’t bet the ranch there isn’t one. I have seen and continue to see so much suffering in the world. If there is a God, is he Ok with that? Why doesn’t he do something to stop it? Why is there so much hate and why do people want to hurt one another? Maybe He can’t help every situation but then why do people give Him credit for all the good then? I do things to be a good person … it makes me feel good to make other people feel good. Is that not enough? If there is a God would he not invite me into the Gates of Heaven? Are you telling me that the serial killer who has killed 50 people but who has now found God in prison has a better shot of getting in than me? I don’t know God’s plan or if there is a God, but if there is I hope there is a room there for a stray like me.
J.P.: You and I planned our 20th high school reunion last year. I remember being at the event and finding myself captivated in the various manners with which people approached you. Some tiptoed up cautiously. Others came on hard. Some acted as if you weren’t in a wheelchair, and a small number flat-out ignored you. I’m wondering how much you pay attention to approaches, and whether there’s a right way or a wrong way.
FRANK: I knew going to our 20th reunion was going to be tough on me both physically and emotionally. The physical part, I prepared myself a few days in advance for. The emotional part I was planning for a lot longer than that. I was going through different scenarios in my mind and trying to come up with a game plan to counter any response I received from classmates. I mean, we have to be understanding here, there were classmates at the reunion that neither of us had seen in 20 years, so there were those who knew I had MS and was in a wheelchair, those who knew I had MS but didn’t know I was in a wheelchair, and those that had neither idea of the MS nor the wheelchair. I want to commend our entire class because for the most part they hit the ball out of the park! Even those who approached tentatively (which wasn’t many) I immediately grabbed and gave them a big hug, which broke the ice immediately. It was a magical night, actually. I want to encourage everyone who’s planning on attending an upcoming reunion to rent a wheelchair for the night and just roll right in—you’ll feel like a rock star the entire night. It was overwhelming attention …
J.P.: During reunion planning, you alluded to our 30th by saying, “I’m not going to be here for that.” You said it two or three times, and I always pretended as if you hadn’t. It made me uncomfortable, because—first and foremost—it breaks my heart. I think the heartbreaking part is, as you’ve noted, you’re probably right. The odds are not great of you being here in 2021. Which is horrible. And yet, you also seem v-e-r-y accepting, and even comfortable, with this. True?
FRANK: I don’t know for sure if I will or won’t be here in 2021. In making that statement to you, it was part tongue and cheek and part truly how I feel sometimes. My only barometer is where I started physically to where I have presently deteriorated. How much decline does the future hold and how quickly will I get there, I truly don’t know. Am I accepting? Part of me is—I mean what can I really do? Don’t get me wrong, does it scare me? Hell yeah, but it is now out of my hands. I can’t really plan ahead for anything. I can’t have future dreams. Life is thrust upon me, so I just manage it. I just live life to live life, that’s it. It kind of sucks when you think about it, but I’m going to enjoy the ride for as long as it lasts. This is why time spent with family and friends is so precious to me.
J.P.: Do too few people fail to appreciate their health?
FRANK: Well sure we all fail to appreciate our health. I know I sure did. I mean, think about—all you know for sure is how you feel in your everyday life. Everyone wakes up, showers, has breakfast, goes to work, enjoys colleagues, has lunch, works some more, goes home, has dinner, plays with the kids or pet, makes love to their significant other—then does it all over again the next day. Where in that schedule does someone have the time to worry about their health?
At no time do you stop during the day and ask “Boy, I wonder what it would be like have cancer or something else that can cause me pain or death?” I’m sure there are times you are thankful for your life, but never do you think a health challenge will jeopardize that or even take it all away. I had it pretty good—great career, great family and friends, loving home, and dating wasn’t a problem. Life was as good as it gets. Then, the punch to the stomach. Life can change on a dime, so appreciate it as much as you can.
The answer to your question is a resounding Yes.
J.P.: I love that your friends built you a ramp. I love that you have a crew of four or five guys who check on you regularly, who stand by you to the death, who would do absolutely anything to protect you. I’m wondering whether having MS has at all increased your appreciation for loyalty? I imagine, on the flip side, that you’ve lost many friends, too—people being uncomfortable, people unwilling to sacrifice, etc.
FRANK: Hands down I have the best friends any human can ask for and probably even deserves. I hit the Friend Lotto Jackpot, and my winnings will pay dividends until the end. I’ve had my friends since high school and twenty-plus years later I consider them family. I haven’t lost true friends (just a relationship, which I will mention later). Seriously, not one person has turned his/her back on me. I was lucky enough to have the opposite—they embraced me tighter. Has my illness increased my appreciation for loyalty? I guess you can say that only because I know all too well experiences of fellow MSers who have actually had family, friends and loved ones turn away from them. Few things break my heart more than that. I have made so many MS friends through the years and I have known first-hand accounts of how the important people in their lives have just simply walked away. Could it be out of fear of the unknown? Could it be out of, “Oh boy, if I stick around will I have to take care of this person and would I even be able to?” Not sure. When someone they love (who they thought loved them back) just drops out of their life, great sadness is experienced. They feel left all alone; but the truth be told we are all better off being alone than with a person who will resent us because of the challenges this illness brings.
I have just one personal experience of someone stepping away and that was an ex-girlfriend. As my illness progressed my challenges became more noticeable, and she started pulling away. She began getting more involved with friends at work which led her into an emotional affair with a male colleague, which later (after our break-up) turned into a full-fledged relationship. I’m quite sure she started having some of those fear feelings that I mentioned above. On top of all that, I’m sure she worried about having a family with me and if I would be able to contribute as a husband or a father. Since the ending was imminent, I obviously just let her walk away. I must tell you, it was pretty liberating for me to do so as I’m sure she felt the same. Why keep someone hostage, who doesn’t want to be there? No hard feelings at all. She owed me nothing. How can you blame someone that can’t handle the situation? Better they leave your life early than stay and make both parties miserable. Loyalty is a precious gift, but hard to find sometimes.
J.P.: What do you believe happens when people die?
FRANK: I’m pretty sure every person walking this planet has pondered that question and any of our thoughts on the matter would be mere guesses. Unless, however you are a person of Christian faith, then you’re going to Heaven as long as you have lived your life according to the teachings and scriptures of the Bible. I do really hope nothing is held against me for not following God like I once used to. All I can speak about is what I hope it is like.
Here is what I think happens when we die: We go to a peaceful place utopia type atmosphere, see our entire family again (Mom & Dad, especially) and friends that have passed before us. We all sit around a gorgeous Italian feast having all you can eat lasagna, manicotti, raviolis, brick oven pizza, homemade wine, while sharing memories and laughs from years past. After dinner we go to the all-you-can-eat Carvel and get it free for eternity! I just hope I’m not lactose intolerant anymore when I get there.
Is this scenario what really happens when we die? I’m not sure, but you can’t tell me it’s not.
J.P.: You’ve shared with me the stories of your many friends with MS, who you’ve met primarily online. It seems like there are some positive stories and a lot more negative ones. So I wonder—does hearing the sad stories about others with MS make you feel better or worse? And how does it help you to be involved?
Also, you’ve told me a small handful of people you know with MS have committed suicide. I’m wondering: A. Do you get that? B. Do you think assisted suicide should be legal? C. How do you counter the depression that surely comes with such a disease?
FRANK: Sure all the stories of my MS friends have an impact on me. Whether a friend has had MS for 20 years or is newly diagnosed, my empathy often times overwhelms me. I can feel their pain, their ambivalence, their fears and I have a difficult time separating myself from their situation. It affects me both positively and negatively, actually. I am that person that people can to talk to whenever they are needing guidance or just someone to listen. I would say over the last 11 years, when a friend or family member hears about a person they know having received an MS diagnosis, they all say you should speak to Frankie … he has MS and I’m sure he wouldn’t mind talking to you and answering any questions you may have. My family and friends always call me and ask if it was OK that they offered up my name and if I was OK with calling this new person. I have always accepted that invitation to talk to anyone who wants to chat. It’s been well over two dozen individuals throughout the years. I enjoy talking to people in general, so talking to someone that is going through the same as I am, just makes it more personal. I like being involved in people’s lives as long as they let me in. You would be surprised to know, that by just making a single positive statement to a person, it can change their entire outlook on what they perceive to be a dire situation. Words are powerful.
I have lost two friends (Diane and Lisa) over the years to this devastating disease. Both circumstances involved these two beautiful women taking their own lives. Their circumstances had become so bad (both physical and mental pain) that dying was the only way they could get relief. I won’t get into the specifics but both took their lives in different ways. Diane, who I spoke to once a month, was going through life, just doing the best she could and seemed (at least on the surface) to be in good spirits. I had zero inclination that Diane would take this route to stop her suffering. That news came as a shock to me and devastated me for quite some time. I still think about Diane often and her journey with MS and the way it all ended.
Then there was my friend Lisa, who I spoke to at least once or twice a week. She lived out west, which wasn’t exactly the best for her because of the heat … but poor Lisa had little money and lived by herself in a trailer. She did have a mom close by but, unfortunately, their relationship wasn’t the greatest. I, along with her family, knew for two years she was planning on taking her life. She would talk about that often with me and her loved ones. A person tells you that one day they will and not only couldn’t I stop it, but I actually understood the depth of her desperation. She used to talk about it quite often and I would always tell her not to talk like that because that type of talk bothered me and made me sad. Looking back, I’d say half our conversations were through tears of pain. She was in so much MS pain that I couldn’t make out her words sometimes and our calls were often quite short.
Well my last conversation with Lisa was on a Tuesday. She had called me, we chatted for a few minutes because she wasn’t feeling well, she said she loved me and I reciprocated the same to her. The next day I get a call from her sister—“Lisa is no longer with us.” I fell into a trance. All these years in talking with Lisa, I knew she was in awful pain, I knew she always felt sad and alone, I knew she wanted to take her own life, but—wow—this planet has just lost a great person and I a dear friend. Was I sad? Yes, extremely. Was I heartbroken? Yes. Both those feelings were for selfish reasons. I no longer had my friend.
Did I get why she did it? Unfortunately, I did. MS—or any illness, for that matter—can become both physically and emotional overwhelming. Sometimes people just don’t see the need to experience any more pain, especially when they know things can’t get any better. Should assisted suicide be legal? That’s a pretty tough call … too many variables involved. Who are you giving this power too? Will this be strictly for people with no hope? What level of physical pain does an individual need to be in to end their life? How early in a disease process can a person decide to end their life? Who decides? The only way to battle the depression associated with MS (at least for me) is to have amazing and wonderful people in your life. Many times the level of depression associated with an illness has to do with a support system. The poor-me thing gets pretty old rather quickly, so having quality people in your life makes things easier. It keeps the depression at bay for me. Multiple Sclerosis is both a physical and emotional animal to deal with.
QUAZ EXPRESS WITH FRANK:
• What the hell is an Italian kid from Mahopac doing on J-Date?: Why are you asking? Do you have problem with Jewish girls? By the way, you mean What the hell was an Italian kid from Mahopac doing on J-Date? I’m no longer on there since I met my awesome Jewish girlfriend Robin! She is an amazing!
• Why can’t you sleep for prolonged periods?: Getting up numerous times a night to go to the restroom and my body stiffness (spasticity) makes it very uncomfortable and sometimes nearly impossible to get any extended runs of sleep
• Hall and Oates or New Edition?: New Edition … no brainer. I heard they played Hall & Oates at Gitmo to drive the detainees crazy. I also heard the detainees were begging for the water boarding instead.
• Would you rather see Bigfoot or the Loch Ness Monster?: Loch Ness Monster.
• Is it true I kicked your ass in high school?: Come on Jeffrey, you couldn’t kick anyone’s ass in High School. I remember rather vividly the 70-year-old (hair-netted) lunch lady putting you in a head-lock and giving you nuggies because you became belligerent in asking for extra tatter-tots.
• Do you think Melissa Fiore would have attended the senior prom with me?: Only if you held a gun to her head.
• Favorite curse in Italian?: I have two—capo di cazzo (dickhead) and figlio di puttana (son of a whore). Both are pretty derogatory phrases; but fun to say nonetheless.
• It’s 3 am. You can’t sleep. What TV show are you watching?: Dateline I.D reruns or the NFL Network.
• Best movie ever? Worst movie ever?: Best—Goodfellas. Worst—A Night at the Roxbury.
• How’s your tail light?: Why do you insist on continuously bringing that up? Are you trying to piss me off? Well, it’s working!
