Adult Corner

Adult Corner
The following was featured in the Mitochondrial News Volume 14, Issue 2

My Three Gifts - By: Gail Wehling


My name is Gail Wehling and I was born and raised in Aurora, Illinois.  I am the proud fourth child of Dolores and Thomas Wehling, a former prominent and long-time local business owner.  In the fall of 1977, neither I nor my family could possibly predict how suddenly and unexpectedly my young life was about to change, forever.

As I was preparing to begin my junior year of high school, I was looking at my new school ID card and noticed that my eyelids looked droopy.  My mom agreed and called a neighbor who, in turn, referred me to one of the leading ophthalmologists in not only the Chicagoland area, but the nation and world as well.  Following my initial appointment began many long and difficult trips into Chicago over many days, weeks and months for extensive tests and examinations.  After many exhausting months, I was diagnosed with Chronic Progressive External Ophthalmoplegia (CPEO).  CPEO is a form of Kearns Sayre syndrome (KSS) that primarily affects my eyes and vision, but now affects my heart and all my muscles.  As I have aged, the disease has also progressed.  All parts of my eyes are now affected which limits my ability to function well on a daily basis.  In addition, my heart and systemic muscle weakness, fatigue, and overall lack of energy (which my body cannot properly produce for it to function normally) limits what I can do every day. 

Because of these new conditions and increased limitations, I recently moved back in with my parents and I now receive Social Security Disability (SSD).  I am the first in my family to receive SSD and it was one of the hardest and most difficult decisions I had to make, but due to the progression of my disease, I simply cannot work anymore. The physical and financial toll has been difficult and painful.  I used to be an independent and self-sustaining woman, but now this disease has taken most of that away from me.

However, despite the numerous surgeries, new symptoms and challenges, I can honestly say that this disease has been a positive influence in my life.  It has given me three “gifts” - a greater appreciation, a deep gratitude, and clarity in my life.  I have a greater appreciation for all that I have.  I have a deep gratitude for everyone in my life beginning with my mom and dad, siblings, nieces and nephews, friends, pastor/parish and doctors.  Simply, I would not be where I am today without their support, care and love.  And, this disease has given me clarity in my life I do not believe I would have if not for the disease. 

Lastly, I am also very fortunate.  Fortunate to have recognized the problem; to have acted upon it; to have been referred to one of the leading ophthalmologists who happened to be local; to have received a “quick” diagnosis of a disease that is familiar and recognizable (in the ophthalmology field); to have all my doctors who continually problem-solve and give me outstanding care; and to have the United Mitochondrial Disease Foundation (UMDF) that provides all of us with mitochondrial disease with help and assistance, support, care and compassion. 

The UMDF staff, and its associated doctors and researchers are dedicated and compassionate.  They work hard every day to find cures and treatments for mitochondrial disease, and provide support to all affected individuals and families.  I first came into contact with UMDF in 2000.  Because they were so helpful and supportive of me, I was inspired to form the first Mitochondrial Support Group in the Chicago area in 2003.  Currently, I am co-chair of the UMDF Chicago Area Chapter Support Committee and am also co-chair of the UMDF Adult Advisory Council Team (AACT) - the mission of which is to represent and serve the unique needs of the adult mitochondrial community. 

Every day, I am deeply thankful and grateful to all in my life, especially the UMDF - their work and mission is now my life work as well.

   

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