Tag Archives: MS

Jane – A tribute

Dear Jane,

It is Friday night and I keep thinking I’m going to pick up the phone and give you a call. You are one of the only people who understand about my son’s difficulties because you have been through it too. You are my go-to person for life’s injustices, life’s tragedies, life’s funny moments and I can talk to you about anything on earth and you to me. I’ve been there through all your hospitalizations, through your difficulties with your family, and you have been there for me in kind. Yesterday I pulled out my old wedding album so I could remember you as the maid of honor, happy, young, and vibrant. It is so hard to wrap my mind around the fact that I will not see you again, except in Heaven, God willing.

We were good friends when we were teens up until our thirties but, as life took us in different directions, we somehow lost contact. We reconnected and again lost contact—this time I was sure our friendship had run it’s course. But one day, out of the blue, you called me and as if no time had passed at all, our bond was still strong and became stronger in the years that followed. I have shared so much of my travails about my child, my inexplicable crippling illness and subsequent recovery upon discovery of the cause (a benign spinal tumor), my ups and downs with my son, and everything in between. Sometimes I would call you and we’d have a marathon talking session about everything, including movies, Stuyvesant Town, old shows, friends, medical issues, family, politics—-you name it, we talked about it. You have been one of my greatest support systems and I feel that I filled that role for you too. I honestly don’t know what I am going to do without you.

To say I was shocked to learn of you passing was the understatement of the year. The last time I spoke with you, you said, “Call me anytime.” So, last Friday night I called to get my weekly dose of love, friendship, laughter, and wisdom from you. When you didn’t pick up I left a message. Three days later I called again, and again, and again, for days and days. At first I was annoyed, then I thought that maybe you were in the hospital again, although you had been doing very well lately. Everything seemed under control with your MS, which was in remission, and your diabetes, which didn’t seem to be an issue. I had no reason to believe that a tragedy had occurred. In my heart of hearts I was frightened and would not even entertain the idea that you had passed away. It was unfathomable to me so I dismissed it for days. But, yesterday something told me to call your brother’s number, which you had given me a few years back just in case. When I spoke with your sister in law, and she said, “I’m sorry to have to tell you this, but Jane passed away”, it felt like there was an explosion in my chest, and a punch to my gut—then the tears and disbelief came.

Jane, you had a very hard life, and a lonely existence up in Lockport, with no real support system. But you became a strong advocate for yourself and still managed to accept some of the seemingly unfair blows life dealt you with characteristic grace and dignity. About a year ago you said you were sitting on the couch watching TV when you saw your mom in the dining area. I asked if you were asleep and you said, “No, that was her.” I asked if you were scared at all and you said, “No.” I believe that your mom appeared to let you know you were loved and she was waiting for you to come over soon. I do not know the exact cause of your demise, but I suspect that it was peaceful, in your sleep. Although I am grieving this loss, I am happy for you at the same time, because at long last you are loved in a way you were not in this physical life. You are, as I write this, in God’s loving arms and with your mom. Your body is healed from your MS and you have no more physical or emotional pain—nobody can hurt you now. You are walking, running and laughing freely and finally at peace. I know you are looking down on me now and thinking of all we shared and how we could sometimes find humor in the strangest places. I prayed to God last night that you appear in my dreams to let me know you are indeed OK. But, I somehow know that you are. Sweet dreams in eternity. You will never be forgotten. Godspeed. Call me anytime!

Love Marilyn

Disabled

Being disabled; that is something that most of us who are lucky enough (and it is luck) to be able-bodied, don’t even consider. I was one of those smug, athletic people who, although having compassion, had absolutely no comprehension of the trials and indignities of the disabled. My symptoms actually came on very gradually, losing balance, dropped foot (although I didn’t recognize it), and constant pain in my entire body. When I look back at this I failed to put these symptoms together and just treated each one as it came. It started out with my knee surgery, which I never seemed to recover from, and it progressed to numbness of my toes, and bad lumbar pain. I was diagnosed with spinal stenosis, had surgery which I expected to solve the pain problem, but as time went on, my life became a nightmare when I actually became worse and only 2 weeks after the surgery, had to use a cane. The worst part was that I began to realize that I had extreme limitations not in just walking, but just in everyday life; things I always took for granted. Driving (if that’s what you’d call it) became a challenge because my right leg was so weak (partial paralysis) that it was an effort to move my foot from the gas to the brake pedal. So then I would compensate and press on the gas pedal extra hard, which would actually deactivate the brake, causing the car to lurch forward and then I’d have to slam on the brake. I had so many close calls–and can only thank God that I didn’t slam into people or cars, killing someone or myself. I would have severe anxiety, even saying a prayer in the car, each time I had to drive. I’d start stopping the car way early so I didn’t run into the car in front of me. I’d drive over to Walmart and when my parking space was too far, I would ask myself, “Do you really need that cheese?” and I would just drive away. When I did go into the store, I’d walk around with a shopping cart (even when I had only one item) because it provided some stability like a walker–which is really what I needed but my pride would not let me use it. In Starbucks, I would just abandon the idea of getting to a specific seat if it meant maneuvering past people. When standing talking to people, I would notice they would have their arms out, always ready to catch me, because my balance was so bad. But the main thing I noticed about being disabled was the shame, humiliation, anger and helplessness I felt in public. I was angry because my body would not do what I wanted it to. Once when my nerve pain was through the roof, I went to the Y, only to discover that the Adapted Aquatics (disabled) pool was closed. I then decided to try using the hot tub, but once I managed to get in, I literally could not lift myself out. The entire time I was in the tub, I wondered how I would achieve that feat, so I could not even enjoy it. I finally managed to grab onto the railing and crawl out, all the while feeling totally embarrassed. When I tried to use the regular pool, I could not climb in and out of the small steps; very humiliating. It is so hard when your body just does not do what your brain says. These were constant indignities that the average person does not experience. But, one thing I noticed was the feeling of being invisible–people don’t want to look at you when you are disabled. Even the doctors abandoned me because I had symptoms that they couldn’t pinpoint. You get looked upon as if your brain is disabled, not just your body. I was lucky enough to finally escape that nightmare and will be forever grateful. But what about people who have a chronic, progressive disease such as MS, where there is no cure, only management. My friend suffers from MS and she has to rely on others to do basic things for her, such as laundry, shopping, driving to doctor’s appointments, etc. She cannot go anywhere unless it is prearranged and often times her “ride” does not show up or is late, necessitating her to postpone or cancel her appointment. She must rely totally on others and her autonomy is non-existent. It is a constant battle with the medical profession, grocery stores, caregivers, family members, and she does not have control of basic everyday things that most of us take for granted. Even her immediate family has abandoned her because in their eyes, she takes too much pain medication, although they have no idea that pain is one of the side-effects of MS. When you are disabled, life is different and one cannot understand it unless you’ve have had a glimpse into that world. I cannot say that I was lucky to have had the experience I did, but it showed me how the world views the disabled. It is amazing how many people don’t understand what it is like as a disabled person, and think that it couldn’t possibly happen to them. But I am here to say that it CAN and it DOES happen, when your life is going well, and you think that you are golden, and nothing can touch you. But just like anything, you cannot truly put yourself into another’s place without experiencing their pain. What it comes down to is that anybody who is “different” becomes invisible, be it not being able to walk, having a deformity, or being a little person. It is human nature to first want to stare, then look away (and pretend that they can’t see it) at the same time; just like a fatal car accident on the expressway, where you just cannot stop staring because you keep thinking, “Thank God that is not me.” But it can be!

Forgetting

As time goes by I am forgetting to be grateful. I have been in a state of flux and depression lately because I am putting too much emphasis on getting accolades. I wrote Being Your Own Cheerleader, but I have been having a hard time following my own advice. I think every human being needs some sort of recognition for what they do, even for seemingly small things. It is amazing how one kind or positive remark from someone can do wonders to carry me for a few days. But it just seems that when I write and write, and have no comments, I begin to doubt myself and all those negative tapes start playing in my head, that I am not good enough, and what’s the point, etc. Then my friend Jane, who has been in and out of the hospital since November, with complications of MS, calls and the amount of gratitude I feel comes flooding back. That is when I remember that back in March 2013, I was literally given another chance at life. Immediately after that surgery I was actually happy, because I didn’t take for granted simple things such as walking across the room without a cane. Now, over thirteen months later, I sometimes forget how horrific my life was and how amazing my life is now. I could compare myself to other people who have more money, a relationship, more friends, and feel insecure and small. But, when I compare myself to my friend who struggles with simple tasks such as just walking, cleaning, loss of autonomy, having to depend on people to drive her to appointments, I am filled with gratitude. When I think along those lines, and don’t let myself drift back into negativity, my day and life goes better.

Miracles

Miracles can come in all shapes and sizes; the trick is recognizing them. I don’t think that miracles have to be huge–sometimes they happen very quietly, and would go unnoticed by anyone else other than the recipient. An example of an amazing miracle for me was, after months of physical deterioration and suicidal hopelessness, the culprit of my symptoms was finally discovered. The ensuing surgery and recovery over the past year has been nothing short of miraculous. Just walking, having balance, working out vigorously, driving without fear, are activities that others take for granted, but I am in awe. Sometimes miracles come in baby steps. After being diagnosed with a potentially terminal illness, my wonderful friend Janet was at the point of giving up. She was having chemotherapy to hopefully prepare her for a possible stem cell transplant, but her blood counts were not good. But shortly afterward, she called me with great news–it seems her blast counts had dropped to the right level, clearing the way for her stem cell transplant. Now, about two months post transplant, she is doing amazingly well with her new immune system (acquired from her formally estranged brother). It has been a long haul but if that is not a miracle, then I don’t know what is. My friend Jane, who has MS, has been suffering from swollen feet for four months, which was a big mystery to her many doctors. She finally put the puzzle together and learned from the pharmacist that a drug she was taking (which she didn’t even need) was the cause. The swelling is abating gradually, which is a real miracle. If you look around you will see miracles in your every day life. But recognizing them when they are not the burning bush variety doesn’t always happen.

Adversity Teaches Empathy

It is amazing that so many people take for granted being well and feeling well. There is nothing more humbling than having a debilitating illness or injury to bring you back to earth. I have been one of those athletic people who would look at someone struggling in the gym or out just walking slowly, without trying to understand that each person has a story. I have been struggling for many months with debilitating back pain and severe degenerated right knee. My back and knee pain was so bad that I would have to hobble from bed into the bathroom each morning, walking like I was 85. The constant, unrelenting pain and soreness also affected my state of mind, causing depression. It is so hard to look at the bright side of things when you are hurting over and over and life looks so bleak. It was so humbling and embarrassing on my trip to Guatemala. On the plane I would start to get anxious when we were about to land knowing that my back and knee would be so stiff that it would take a while for me to unbend. Getting up and carrying my luggage out of the plane was torture. I always thought of myself as this physically fit specimen and now I felt like a cripple, limping down the aisle. Things that I used to take for granted, like climbing down the steps of the airplane (in Augusta for some reason you have to climb down these stupid steep steps to get off the plane) caused me so much anxiety—being so afraid that I would fall or need assistance. When you are physically well, things like that don’t even occur to you. Now things that were never issues were now major concerns. Once in Guatemala, I was in constant pain, living on Ibuprofen. It prevented me from going on walking tours and, coupled with me being lonely, I was miserable. When I went on a tour to Panajachel I had to constantly climb in and out of the boat that ferried us from village to village on Lake Atitlan and that was pure torture. Once if it had not been for two guys holding me, I would have collapsed, due to my knee totally buckling under me. Back in the States, it did not get any better and I have since had knee surgery (much more extensive than I thought it would be) and have also had epidural steroid injections to my back. I want to travel now, but I was unable to plan for anything due to the constant uncertainty of my physical condition. Whenever there is a life altering event, whether it be a loss of a job, illness, death, divorce, you always look for a reason. The thing is that I feel there are no coincidences in God’s world and it may not be revealed until years later or weeks, you do not know. I am slowly starting to feel better but being so debilitated gave me real empathy for others. When I see people hobbling slowly across the street I know that there is a story behind it. I have a friend who suffers from MS and is on disability. She is estranged from her family who is totally unsupportive, yet she still perseveres. Another woman I went to school with just finished battling stage 4 uterine cancer, having gone through hell with chemotherapy, major surgery, colostomy, and having to rely on others since she lives alone. Then I look at myself and realize that maybe it is not that bad. Of course, when you are feeling better it is easy to look back and say it was not so bad. I am still having problems with numbness in my body, but maybe this is God’s lesson for me; be grateful for each day that you feel well and don’t take it for granted. It has given me a better understanding of other’s problems and pain, physically and mentally. Nobody has a perfect life, although sometimes it seems that some people do on the outside. It has also given me more of an incentive to change my life because I can appreciate that there are no guarantees that you will be around tomorrow or even later in the day. We take for granted that we have an infinite amount of time to achieve that elusive happiness and that is not true. My friend Janet is now in France with her husband, one among many trips they take. They are living now, not putting off what may never happen if they waited. Being so ill has put a time frame to my plans. I know that I absolutely cannot continue to live a life doing what I don’t want to do. I ask myself sometimes, “when are you most happy.” The answer always comes back, “when I am not at work.” It is time for me to move on to the next phase of my life. I am so consumed with making money due to my upbringing (compulsive gambler dad) when money went flying out the window and life was insecure, that now it is my main focus. Yes, money does buy things I like, but continuing doing what I don’t want to do is killing me over and over. One day I will wake up and it will be my last day on earth and I will die never having taken the big risks and living a life of my dreams and how sad is that?