Monday, October 13, 2008
I've never been an overly religious guy. More than anything, I like the traditions and culture of my religion. However, like most people, I occasionally struggle with questions such as whether God exists. This year, the High Holidays took on a new meaning for me. This year, I wondered why I had not been given a healthy year and who was to blame.
Last Rosh Hashana, I was a 23 year old kid just starting a new life for myself in Colorado. I had a great job, wonderful friends, a rich social life, and my health. Things were good. I prayed for my life to continue the way it was. My prayers did not get answered.
This Rosh Hashana, I am a 24 year old man living life with MS. I have to regularly go in for doctor's appointments, experience some severe symptoms of the disease, take injectable medication 3x a week, take 2 medications twice a day and another pill before I go to sleep at night. Clearly, whatever prayers I uttered last year were not good enough for the Big Man to grant me a healthy year.
This year, as I sat in services for Neilah, the service which marks the end of Yom Kippur, I closed my eyes and prayed. I didn't pray in Hebrew. I didn't read the words from a book. I simply opened my heart and prayed. Maybe to God. Maybe to the energy that fuels the world. I don't quite know to whom I was talking.
Then, as if a light went on in my head - it hit me. I was praying to me.
Only I have the power to make the next year as happy and healthy as I can. I have the power to change things in my life I am not happy with and improve my quality of life. I will set goals this year. Some I will accomplish and others I will not. I can only hold myself accountable for the things that happen in my life.
Whether God exists or not is something that I will continue to struggle with for the remainder of my life. But I can't blame somebody/something else for my problems. Nor do I need to assign any blame at all. It is what it is. Shit happens. Now I have to move forward and live my life. I have to surround myself with positive things and positive people that will continue to make my life great. Sitting around and blaming God for my problems doesn't fix anything. And, when I think about it, I did have a healthy year - I lived for another year. That's really what counts - that I'm still here - breathing, sweating, loving and living.
Thursday, July 24, 2008
When I was first diagnosed, I was in such a state of shock that it took a few months for the reality of my diagnosis to set in. As I began to do more research and find out more about M.S., I was bothterrified and encouraged at what I found out. I was terrified because some cases of M.S. are severe, and cause a lot of problems like total limb numbness, the inability to walk, cognition problems and bladder control issues. To be honest, for me, the most daunting prospect that I was facing was life in a wheelchair. I love hiking, playing sports, snowboarding and I was worried that the opportunity to do the things I love most would be affected by M.S.
Despite all of the negative things that M.S. can cause, I was encouraged when I met many MSers online who had been living with the disease for 10, 20 or even 40 years. Indeed, some do have mobility problems, or bladder control issues, but many lead fairly normal lives. Most have children, husbands or wives and full-time jobs. Seeing so many others living with the same disease and functioning well in society made me very optimistic for my future.
As I began my regiment of injections in January, I had a new outlook on MS and I refused to let it run my life. Despite some occasional soreness, and sporadic days where I could barely get out of my apartment, I have to admit that most days are good. I try to take advantage of the good days by staying as active as possible. Since my diagnosis, I have danced at concerts, gone snowboarding, participated in a 3 mile M.S. walk, played in softball and volleyball leagues, been to several music festivals where lots of walking is involved, and went scuba diving for the first time. I am so glad that my activity level has not been negatively impacted by my M.S.!
November seems like a lifetime ago. It’s amazing to think how my life has changed in so many ways but also stayed the same. So far, I am not impacted by M.S. very often. I know that most likely, I will face some of the problems that I’ve heard so many others talk about. However, in the meantime, I am living my life the way I want to and I have no plans to let M.S. slow me down.
Tuesday, May 6, 2008
When I was a little boy, I relied on my mom to get me through every trip to the doctor’s office, no matter how routine it was considered. Her lap was my chair for most of the day. After the physical exam, which was the least of my concerns, we had to walk down a hallway lined with teddy bear wallpaper towards my least favorite part of the visit. After a few trips down this hallway as a child, I had learned to not be fooled by the innocent bears who now seemed to hum a dirge as I walked slowly by them.
Awaiting my arrival down the hallway, plotting her attack, was a nurse. Her instruments of pain: needles. Right beside the needles was a seemingly endless amount viles to fill with my blood. My mom took her position and sat in the chair typically reserved for the
victim patient. After calming me down for several minutes, (I required more than just your standard lollipop), my mom opened her arms and invite me to sit on her lap.
As the nurse prepared my syringe, my mom wrapped her arms around me and hugged me tightly. The nurse showed me dozens of blood-filled viles, assuring me that many kids had come through and survived the ordeal. I didn’t care about the other kids. Showing me about a hundred viles of blood only exacerbated my fear.
The nurse approached me and I began to cry in anticipation of what was coming. I begged and pleaded to be released from this torture, but to no avail. My mom began to rub my back to help me relax. As the nurse grabbed my arm, my mom whispered in my ear that everything would be ok. The tears flowed down my face as the nurse pricked my finger. My mom squeezed me tighter, maybe to pump some more blood out, but mainly because I think she actually felt my fear. She did everything in her power to make the situation as painless as possible.
That’s my mom.
Flash forward 20 years to November, 2007; the month of my MS diagnosis. My parents knew that I was experiencing some strange symptoms, but none of us had expected that MS would be the culprit. After receiving the news from my neurologist, I knew I had to tell my parents. It was one of the most difficult phone calls of my life. As we talked that night, it didn’t take long before my mom’s loving nature came to light.
First, she cried. I suppose most mothers would if they heard that their child has a chronic disease at such a young age. After working through the crying, she began suggesting ways to help me get through this rough time. She offered to fly out to Denver to be with me. She offered to make me chicken noodle soup and ship it to me. If there was anything in her power that she could do to help me, I know that she would do it with no hesitation.
Even though so much has changed in 20 years, my mom’s love has never wavered. My mom and I have a great relationship and it has only been enhanced since my diagnosis. Now whenever we see each other, her hugs seem extra long and she squeezes me tight. If I am having a bad day, she will rub my back to calm me down. She will do everything in her power to make the situation as painless as possible.
That’s my mom.
Friday, April 25, 2008
I apologize for the long delay in between posts. Life in Denver has been keeping me busy as of late. However, I was able to get away for about 25 hours and travelled back to Dallas last weekend to be with my family during Passover. It was the first Lifshen Passover I have been present for in several years. It was also the first time seeing the majority of my family since disclosing my MS diagnosis. Naturally, I was a bit nervous and apprehensive while waiting for the family to arrive for the Seder.
As I have discussed before, people react to bad news in a variety of ways. I didn’t know how my aunts, uncles, cousin, grandmother and family friends would treat me during my visit. Although I didn’t want to spend the weekend talking about MS and answering the oft-asked, “How are you feeling” question, I understand that people only ask out of natural curiosity and because they care.
Despite my initial concerns, I was happy that my family conducted themselves well during my trip (somewhat of an accomplishment if you know my family). We schmoozed before the meal started, and not a single person made me feel uncomfortable or awkward by asking me in-depth questions about MS. I was able to enjoy dinner and, if you can believe it, actually forgot about MS for a while.
During the post Seder schmooze-fest, I got into some more in-depth conversation with a few family members about MS. I still find it extremely difficult to describe to people just how MS feels: Sometimes pins and needles, sometimes tingling, sometimes sore, sometimes numbness, sometimes tired, sometime a nasty combination of any number of those sensations. We talked about how my medications made me feel and how hard it is some mornings to get out of bed and moving around.
Overall, I was really impressed with the way that my family handled the situation. Although I was diagnosed the week before I was home for Thanksgiving, I chose not to tell people during that visit because I did not want to detract from the fun that everybody had from being together again. After worrying about the same thing for this visit, my fears were put to rest by the wonderfully supportive and non-invasive stance that my family has developed.
Friday, March 28, 2008
Since my diagnosis, I have been astounded to see old friends come out of the woodwork to show their support for me. It was incredible that despite not speaking to people, some for as long as 10 years, I got emails and calls from them just days after I began to inform people about my diagnosis. I am amazed at the human ability to care about somebody years beyond physical or even verbal contact.
At first, I wasn’t sure if it was sympathy, guilt or genuine love that inspired these people to reach out to me. My initial thought was that they felt bad for not maintaining a closer relationship over the last few years. Maybe writing an email or sending me a message on Facebook was their way to get rid of any residual guilt that they felt and convey their sympathy at the same time. Then I realized that no matter the time or space in between seeing each other, these were people who really felt impacted from my diagnosis. I then realized that my diagnosis affected not only me, but the network of friends that I had built during my lifetime.
Hearing about MS and knowing somebody that has it are two completely different things. I think my diagnosis was a shock to most people because you don’t expect somebody you know to be diagnosed with something so serious at a young age. Anybody who knows me would tell you that I am vibrant, outgoing, and full of life. My MS diagnosis put a new face on MS for many people. It is important for everybody to realize that serious diseases such as MS can strike randomly and there are no precursors to their onset.
I am so appreciative for the support that I have gotten from my friends, old and new. This experience has even allowed me to rekindle old friendships and get back in touch with long-lost buddies. Although it might be hard to believe, there are some positive things that have happened as a result of my diagnosis. I truly believe that this is one of them, and I am so thankful for the opportunity to reconnect with old friends.
Multiple Sclerosis is believed to be an auto-immune disease. Healthy immune systems are necessary for fending off viruses and other diseases. For some unknown reason, the immune system of Multiple Sclerosis patients attacks the body’s own cells. Over time, the protective layer of the cell called myelin is worn down from these repeated attacks. The areas of decreased myelin form scars on the brain and spine. Multiple Sclerosis literally means “many scars.” As the cells lose their protection, the brain’s signals to various parts of the body are slowed or stopped completely.
Multiple Sclerosis can cause a variety of problems including blindness, bladder control problems, headaches, slurred speech, balance issues, numbness, and paralysis. For a young man like me, potentially facing these major problems has been very daunting. I have started this blog which helps me to express all of my fears, anger, frustrations, and problems that stem from Multiple Sclerosis. Most importantly, it reinforces all of the goals that I wish to achieve in life that are now in jeopardy because of my diagnosis.
Although many people suffering from Multiple Sclerosis share common symptoms such as chronic fatigue, the disease affects each person’s body differently. For me, I have experienced constant fatigue from even the smallest physical activity. Even mundane tasks such as walking my dog, or taking out the trash have become exhausting chores. My balance has also been affected and I often find myself bumping into stationary objects around my apartment and workplace. Unfortunately, there is no way to predict when and where in the brain the next attacks will occur. Although there have been major advancements in the development of treatments to delay the effects of the degenerative disease, there is still no cure for MS.
To help combat this disease, I am participating in the Multiple Sclerosis 5K Walk in Denver in May. This event will help raise money for research to improve the lives of myself and the nearly 3 million other people across the world living with Multiple Sclerosis. Alongside me will be a team of both family and friends who have all dedicated their support in making a difference in the lives of MS patients.
I ask for your support to help us in our mission. With your support, we can make a significant impact in the quest for an MS cure. Your contribution will have a direct effect on me and so many others living with MS. To make a tax-deductible contribution, please visit our team’s page at http://main.nationalmssociety.org/goto/msisgoingdown. If you would prefer to make your gift by check, please email me and I will be happy to provide you with instructions on how to do so.
Thank you in advance for your support and generosity. Together, we can make a difference.
Friday, March 7, 2008
March 10-17 is national Multiple Sclerosis Awareness Week. With the week upon us, I can’t help but realize how it has become so significant to me. I now find myself part of a community I knew very little about before my November 2007 MS diagnosis. So many things in my life have changed since then. Although it is has only been a few months, it seems like a lifetime ago.
November 15, 2007 is a day that I will never forget. After experiencing some tingling and numbness in my legs, I was convinced that the problem would be minor, such as a pinched nerve or a stress fracture brought on by the hours of continual standing and running that my previous job required. Although I was nonchalant about the symptoms I was experiencing, I became worried after the doctor’s assistant called me and asked me to come to the office to discuss the results of my recent MRI. I had been expecting the results by phone. This was the first hint that something serious was wrong with my health. Worst of all, I had to wait three days before I could get in to see the doctor.
On that cold Thursday morning, I remember going to my neurologist’s office a nervous wreck. I didn’t know what to expect. I anxiously sat in the waiting room as the doctor was running late (surprise, surprise). When he finally called my name, he walked in front of me down the hallway. I took some deep breaths. I did not know what he would say.
Once I was seated in the exam room, he flipped on a wall-mounted X-Ray viewer with my MRI results already loaded. I couldn’t believe what I saw. There were so many white spots on my brain that were obviously abnormal. It looked like my brain had chicken pox.
Three distinct white spots appear on my brain MRI
The glowing areas show active areas of
demyelination in my brain
I swallowed hard and stared incredulously at the images in front of me. As he explained the details of the MRI results, I couldn’t bring myself to say anything; I was in shock.
One of the things that I like about my neurologist is that he is a straight shooter. He is very good at explaining things to me in layman’s terms, realizing that my neurology knowledge is limited. He said to me flat out, “What I see is consistent with the early stages of MS.”
Wow - didn’t see that coming.
I started to cry in his office. I tried to hold it in, but the tears just kept flowing. He handed me a box of tissues. After making sure I was O.K. to go on, he explained all about MS and its effects on the brain. We talked for nearly an hour that day about what I could expect next. He recommended a spinal tap to corroborate the MRI results, which I scheduled for the following week. The spinal tap confirmed the diagnosis.
So, that’s it. I have MS.
At that time, I did not know much about Multiple Sclerosis. I went home and immediately began researching everything I could about the disease. Although I knew that MS caused problems with the legs, I did not realize the entire body could be affected. Multiple Sclerosis is a disease of the immune system. The immune system in healthy people defends the body from outside invaders such as viruses and bacteria. The immune system of a person with MS, however, works much differently.
MS causes the immune system to attack the body’s own cells. Slowly, the protective layer of the cell called myelin is worn down from the constant attacks. Decreased myelin slows or blocks the brain’s electrical signals to various parts of the body causing loss of sensation. The areas of decreased myelin form scars on the brain and spine. Multiple Sclerosis literally means “many scars.”
Depending on the particular area of the brain or spine that the disease attacks, a person living with MS can experience a variety of symptoms. Many MSers experience chronic fatigue. Other symptoms of MS can include blindness, bladder control problems, headaches, slurred speech, balance issues, numbness, and paralysis.
One of the difficulties with MS is that it is completely unpredictable. There is no way to know when and where a new symptom will pop up. In my case, my primary symptoms were tingling and partial numbness in my legs and extreme fatigue walking for even shortest distance. However, it is a progressive disease, meaning that things get worse over time. Additionally, there is not currently a cure for MS. A neurologist can prescribe a disease-modifying drug, meant to slow down the effects of MS. There is no way to repair the damage already done; but the hope is that with early treatment, one can delay the devastating effects of the disease for as long as possible.
At the beginning of the month, I was a perfectly healthy 23-year old. Now, I had a chronic disease and faced a life filled with doctors’ appointments, medication injections, and all of the nasty side effects that often accompany treatment. Not to mention the potentially debilitating problems that accompany the disease itself.
I suppose I could have reacted to my diagnosis in a few different ways:
- 1) Get angry at God, or my body, or even my doctor
- 2) Sulk and fall into the depths of depression
- 3) Accept it and move forward
Ok, maybe I make #3 look like the obvious choice, but believe me options 1 and 2 were looking pretty good for a while. It took me several months to fully accept MS as a part of me. Most adults know somebody living with MS or somebody that battled MS during their lifetime. My family and friends were all quick to share stories of loved ones – mostly their successes and how they were managing the disease. Despite the many stories of valor that I heard, I began to look for online communities filled with other MSers who I could relate to and who might provide some first-hand insight into life with MS.
Expecting to hear horror stories and worst-case scenarios, I was caught off-guard when I realized that the majority of online MS communities were awesomely warm and positive places. I made immediate connections and learned so much more about MS living than I ever thought possible. The online forums became a second home for me – a place where I could share my worst fears and be comforted by others who continue to live with the same daily struggles as me.
Without the support of these websites, I would not be as optimistic about my prognosis. Along with the love and encouragement of my family and friends, I am so overwhelmingly thankful for the self-confidence that has been instilled with the help of the online MS community.
I learned from the communities that it’s O.K. to be scared. It’s O.K. to cry. It’s O.K. to worry about the future. Just as important though, it’s O.K. to laugh. It’s O.K. to make fun of myself and the odd things that MS makes me do.
Living with MS is a constant struggle for me and nearly 3 million people around the world. It is a very difficult disease to diagnose and although there has been advancement in treatment, there is not yet a cure. Multiple Sclerosis Awareness Week is important because it reminds us that MS strikes randomly and could one day affect us or somebody we love. It also puts an emphasis on fund-raising to find a cure because no one should have to suffer the destructive effects of this dreadful disease.