Meet the Member
by Melanie Bassett

Melissa Mambort

Melissa Mambort, whose forum name is “Sunfish,” did such a good job on her questionnaire that it will be published in first person. Thank you, Melissa, for sharing your story and showing us what courage and wisdom you have. You have shown us the other side of the cloth and God has created someone beautiful when he created you.

What does you forum username mean?

A conglomerate of "sunshine" & "fish", which are two of my other nicknames, "Sunfish" has many layers of meaning for me. Perhaps most simply, my dad has called me sunshine for as long as I could remember, at least partly b/c for many years I was an early riser. In college, "sunshine" resurfaced at 5am crew practices when I was often one of the most awake and also happened to have a bright yellow windbreaker.

"Fish" was initially simply due to my love of water; I loved swimming before I could walk. Over the years, I’ve spent loads of time swimming, coaching, teaching, and life guarding. An autonomic specialist (whose son happened to be on the swim team I was coaching at the time!!) once commented that I'd be better off if I could live in water, as I wouldn't have to deal with gravity. I was able to be much more active (and feel better) in the water up until my need for long-term IV lines. So thus, I am in some ways a "fish out of water" or, more aptly, a "sunfish out of water". The fish is also representative of my faith, as a particular fish symbol (known as an icthus) was a secret symbol for Christians during times of religious persecution.

Do you have any other nicknames?

Aside from those already mentioned above, Mel, Mambo, Melon, Me, Mo (one of the 3 stooges), Lissa and Missy have all served time over the years. I'll still answer to them all but prefer Missy to be left to the younger years.

What is your diagnosis?

I no longer fit any of the diagnostic categories perfectly, but my current diagnosis is some type of Progressive Autonomic Neuropathy and/or Autonomic Failure, possibly autoimmune or mitochondrial in origin. For me, this includes severe orthostatic intolerance, blood pressure and heart rate liability, severe gastroparesis and intestinal dysmotility, neurogenic bladder, sleep apnea, hypohydrosis, temperature dysregulation, migraines, etc.

In addition to typical medications, I have a long list of "bells & whistles" to help me survive in the best way possible. I am completely dependent on IV nutrition and hydration. I have a J tube for medication and some supplemental feeding. I also have a G tube for gastric suction and drainage. I use a CPAP machine, self-catheterize, and have a reclining wheelchair.

When were you diagnosed?

My first dysautonomia diagnosis was just over ten years ago (when I was 17), but retrospectively I had some signs for about 5 years prior to that. While there have been ups & downs (literally & figuratively!!) over the years, in general my autonomic dysfunction has been progressive.

I have participated in numerous research studies and new experimental treatments. While they haven’t always brought about the benefit we would have hoped for, I’m thankful to have had the opportunities to try so much.

What is your family like?

I moved back in with my parents, Linda and Terry, this past fall, as my health declined to a point where it was no longer possible to live on my own. My "little" brother Tim (5 yrs younger but almost a foot taller) just graduated from Syracuse University this spring and is currently traveling in Europe. He competed with the Syracuse Crew Team in England in early July.

Do you own any pets?

I have a cat named Czar, who serves multiple roles as best friend, boyfriend, therapist, bedfellow, and foot warmer, and who is quite handsome. Some days I’m not quite certain that he is fully a cat (and not part dog and/or human). We found each other at the Humane Society in 2002 during my years in Maryland. I have been amazed at his continual adaptation to all of my medical equipment and his apparent realization that the tubes and wires aren't things to be played with despite their great resemblance to cat toys.

My parents’ house is also home to Buckeye, a shyer cat who found her way into my aunt's house a few years back. We recently said goodbye to AT&T, a kitty who had been with our family for over 15 years but was really hurting in the end.

Do you have any hobbies?

While I'm unable to actually "do" much of what used to fill my time, I'm thankful that I've never been one to get bored or have trouble occupying myself. This doesn't mean that I don't miss my former pursuits - I do deeply - but I'm thankful I was able to enjoy them while I was able and am glad that even now I can still keep myself entertained quite readily to whatever degree my health allows. There have been many times these past years that I have been unable to read or write, so I appreciate and enjoy these pursuits all the more when I am able.

I've enjoyed following my brother's rowing (as I used to row myself). I love music, and while I’m no longer able to sing or play myself (I played cello, piano and sang everything from classical to acappella to musicals to gospel), I can still listen. I try my best to keep up with friends and family near and far but often fall behind with this. I thus created a website last fall (http://www.freewebs.com/sunfishoutofwater). The site, currently overdue for some overhauls, has helped in this regard. My former graduate school advisor has also used it for a course on chronic illness, an unexpected yet welcome “extra” that happened along the way.

I'm no longer able to work or attend school in any capacity but volunteer with DINET as a forum moderator, and a pretty obsessive one at that. While there are times when I'm not able to be online, I always play catch-up as soon as I'm able to and thus have literally read every post on DINET since I started moderating about two years ago. I hope that my work with DINET is at least some help to those dealing with dysautonomia. If I happened to wake up tomorrow the picture of health & money were no issue, I'd head to medical school in a heartbeat.

What is your favorite childhood memory?

Perhaps I'm an anomaly, but rather than having a particular memory that stands out I have a list of good memories that can't really win out over one another. I loved traveling. My trip to Japan as an exchange student at 13 was certainly a highlight.

I love oceans and mountains, so times at either of these locales were also tops. My heritage also means a lot to me, so things related to this have a dear place in my memory and my heart...baking with my Nana, visiting the little Baptist church in West Virginia where my great grandfather presided, learning a polish recipe from my Grandpa, or visiting the Statue of Liberty while hearing about my grandparents’ voyage to America with my 2-yr-old father at their side. I really could go on and on… from seeing my baby brother for the first time to mission trips to summer horseback riding and music camps to Macy’s Day parades (in person) to walking with Alice in a parade at Disney.

What or whom inspires you?

Rather than any one person or thing, I glean inspiration from anyone and anything ranging from people I’ve only read about to those in my family to books (most particularly the Bible and memoirs/stories of perseverance) to music of (almost) all types to nature and the great outdoors.

What is your life like today?

I struggle to find the balance between holding onto hope and accepting reality but firmly believe that both are essential and not at all mutually exclusive. I’m constantly having to redefine hope, from what it means to best contribute and give to others as well as what it means to be fulfilled. I am continually learning that many things don’t have answers, that life can be pretty darn hard, and that God is truly the only one who holds the future. And I believe strongly that my life – no matter how hard at times – does have meaning, and that struggles serve a greater purpose…even though I usually don’t come close to understanding what that purpose might be. As a young woman in an article entitled Courage in Young Adults with Long-Term Health Concerns so aptly states, “No matter what the weave on this side of the cloth looks like, God is creating something beautiful on the other side.”

After multiple occasions during the past year where – if things had turned a slightly different corner – I could easily not be here now, I feel more than ever that I am here for a reason. And while I’m not afraid of death, and firmly believe that better things await me on the other side, I believe that my time here on earth isn’t meant to be over quite yet and thus – for now at least – plan to keep on fighting.

While tubes and IVs are still a constant companion, I’m appreciating the current respite from hospital stays and critical illness for as long as it lasts, whether that time is to be measured in hours or years. This does not mean I’m expecting the worst or losing sleep over what may happen next. It does not mean that I’m not hopeful that the worst is behind me. It simply means that I’m appreciating, and at times even enjoying, the now, while still recognizing my physical realities and trying to make the best decisions for moving forward. I appreciate the “little things” more and more…being able to take a weekly shower after months without, sleeping in my own bed, being able to get my own clothes out, etc. – yet the very fact that they aren’t “little” can, in itself, be hard. Because while I am continually thankful for the times I can do things, I still grieve for the times when I didn’t give them a second thought and when – at 27 – getting outside wasn’t something worthy of a news bulletin.

I believe that, with God, all things are possible, but that doesn’t mean that physical health or healing are the only answers to prayer. My faith in God and His presence in my life are the only thing that keep me going at times, but that doesn’t mean I don’t still struggle or have unanswered questions or days of despair. I wrestle with God frequently and am thankful that God seems to be okay with that.

I grapple regularly with issues that many aren’t comfortable with – physical or otherwise – and thus struggle to be authentic without scaring people away, and to maintain friendships with people dear to me but whose lives are so vastly different than my own.

I can be incredibly determined and inordinately stubborn, traits that have been both a blessing and a curse in my efforts to live life to its fullest despite illness. Without my stubbornness I likely wouldn’t have graduated from college (Johns Hopkins in Baltimore, Maryland in 2002) nor have been able to work the few years that I did. I wouldn’t have attempted grad school and would have given up a lot of my independence much sooner in exchange for less struggle or disappointment. And I would certainly have more “what ifs” in my mind, wondering if I could have pushed more. But, while I am 200% confident that I pushed as far as pushing will go, it didn’t come without a price. I had to face a lot more disappointment head-on. I had years of doing nothing but school or work in order to barely get by physically, and I ended up with an injury (from a fall due to a faint) that necessitated spine surgery. I’m far from being without regrets in my life, but having pushed too hard or too much physically isn’t one of them. I am confident that I did all I could and will continue to do so, whether that consists of brushing my own teeth or finishing a triathlon (something I used to enjoy) or anything in between.

Losing so much of my independence over the years has been one of the toughest things for me, both personally and in regard to the burden I am so aware of it placing on my parents. It’s hard at times to not feel like the “real me” gets lost under all of the medical problems, and to not feel guilty for taking away my parents’ “empty nest” years.

I do have dreams of better health...of eating, swimming, running, and walking more than a few feet; of being free from tubes and IVs and beeping machines; of going out on my own, working, traveling, living independently; of playing piano and cello, singing, and being in a show. I don’t think there’s anything wrong with dreams, but I try not to dwell on them. Instead I try to make the most of what I have to work with in the here and now, to create new dreams, to be as open as I can be to the purpose for my life (as hard as it may be to understand what that may be at times), and to remain hopeful in a way that isn’t limited to (and is in fact far deeper than) better health. There are many days I don’t succeed in this, but that doesn’t mean I can’t keep trying.

Though much of my medical situation has progressed to a point wherein – thankfully – most DINET members can no longer say “me too”, the DINET family has continued to amaze me with its support. From the handful of people who have truly become some of my closest friends (who would have thought this to be possible on the internet?!) to those I hardly know, it’s a pretty neat thing to be surrounded by love, support, prayers and so much more from around the world. It is something I appreciate more than words could ever express.

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