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Wednesday, May 18, 2022

Living with Neurofibromatosis type 2

A guest post by my friend and fellow NF2 warrior Michie O'Day.

May is a Neurofibromatosis (NF) Awareness Month - a busy time in the NF community. Patients, family members, leaders in medical treatment, science, research, patient care, and advocacy are all busy sharing important information - and raising money for our cause. This is all good, but I want to take a different tack... Here goes.

I have NF2 - which I describe as a special talent for growing benign tumors in my brain and on my spinal cord. Rather than talk about the surgeries, treatments and medical consequences, I want to share some of what I’ve learned over the past 39 years since diagnosis. My goal all along has been - and remains - not to give up too soon. Even though this genetic disorder can been debilitating, progress is being made. Surgical techniques are better (and less invasive!), scientific knowledge about our messed up gene, which allows these tumors to grow, drug options, patient care - all of that has improved significantly.

I’m also a good patient. I’m resourceful, confident in my abilities and coping skills, resilient yet open-minded. (I’m just talking medicine! Not politics.) I expect a lot from my doctors, and I want them to expect a lot from me. All this leads to my ultimate goal - to live a happy and productive life. How to do that while carrying this heavy load? Here’s my short list.

Get Good Advice
In 1983, while living in NC and after a CT scan at Duke Medical Center revealing acoustic neuromas, I sought a second opinion from Dr. Allen, then practicing neurosurgery at Johns Hopkins. I knew him from previous consultation in the late 1970s and trusted him completely. His words are still guideposts for me.

You face a lifetime of surgery.” He thought I could do better than the young neurosurgeon at Duke who wanted to operate. I did not like the surgeon at Duke so was receptive to Dr. Allen’s advice.

You need someone who is highly, highly skilled, who has excellent judgement, and whose philosophy works with yours.” - Dr. George Allen

This affirmed my instinct that NF2 tumors are not for your “neighborhood neurosurgeon.” I’ve seen this happen in my own family and with others who have recently been diagnosed and don’t fully understand what’s at stake yet. Get referrals and travel if you must to find the right doctor (neurosurgeon or neurologist, depending on your case) and continue with him/her for as long as you are pleased with their qualifications and care. As Dr. Allen advised, don’t make yourself crazy going all over the country interviewing various surgeons every time you need treatment. There are more doctors treating NF2 patients now, but Dr. Allen’s advice has served me well. Continuity of care is important.

I also met with the pastor of a small church I attended in Henderson, NC. Rev Jones had multiple sclerosis. He was a fine man and very helpful to me - a frightened 27 year old. “Remember ownership” he said. “You have NF. It doesn’t have you.”

Instead of asking what if? Learn to say so what?” also from Rev Jones, who knew where of he spoke.

Some Observations
A life with NF2 is indeed a journey. You’ll come to know yourself well. You’ll also develop your own philosophy about illness and develop practices for dealing with the inevitable disabilities and discrimination. I cannot imagine doing any of this without strong spiritual beliefs.

Over the years, I’ve learned the importance of being adaptable, the need to think creatively to roll with the inevitable changes that come with the disabilities caused by your tumors and treatment.

Be prepared for major changes in your lifestyle and activities. For example, hearing loss in lesser degrees changes some things. Complete deafness changes many more things - and will likely have a profound impact on relationships and career options.

Loss of all my hearing was of course a big deal, but it was not devastating in the ways I feared. With the support of good employers, family and friends, I continued to work, had an active social life, married a good man, began painting, traveled, and relocated to the coast of Maine. I also had an amazing hearing service dog - “Doc” - who added much to the quality of my life.

Loss of balance and peripheral neuropathy cramped my style in bigger ways. A wheelchair became a necessity in 2015, so there are many places I simply cannot go now. The neuropathy is weakening my hands. No more painting or cooking. I miss painting a lot, but if anything I have more appreciation of art by others. I miss cooking too, but I can still eat! Now my vision is at risk. Yikes! Creativity won’t compensate for blindness - if it happens - but spiritually grows. I’ve found that some Buddhist philosophies are helpful with loss too.

Build good working relationships with your doctors. The right doctor will respect you and listen to you. Remember that you are a diagnostic tool as well. Information about how you function in your day-to-day life is important.

If you find that your doctor is not listening to you, respectfully request referral to another physician.

Emotional loss comes with disabilities. Know that and get help for depression if you are hurting. Yet also understand that with disability you can also find creativity - new ways of doing things you enjoyed before, and new activities to try.

Be careful about people who treat you as “less”, who put you down. They may not understand what your daily life is like and can damage your self-esteem (which may already be fragile after the surgeries and ensuing disabilities). This has happened to me even with close friends. It has been sad, but I wonder if those who have known me longer have a harder time dealing with the “new” me?

Keep up with your appointments. Don’t skip MRI scans or other diagnostic tests. Try to follow the doctor’s plan for you. After all, that’s what you’re paying for, and timing is crucial for treatment. If you’re having problems with their directions, it’s your job to communicate that to the doctor. Hint: use good judgement as to how and when you complain!

Having a good sense of humor is helpful for relieving stress. Just don’t go overboard. Being able to laugh at myself is probably the best tool I’ve got.

That’s it for today. I hope you’ve found my list interesting and helpful. Personally, I think I have a truly fascinating life. It’s slower than it used to be, but I like the wisdom that comes with age. And patience? Still working on that.

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