My damage has been done and is still being discovered as I grow older. I have had multiple surgeries to remove dying organs due to disease or scarring. My body still bears marks from cigarette burns, liquid burns and a leather strap. I am still prone to addiction, so I am extremely careful with alcohol, l simply don’t drink. I live in constant pain but take no pain killers as I am too afraid of addiction. I have my own service dog who accompanies me almost everywhere I go. While the list of things I cannot do grows, the list of things I am learning is too. I have expanded my own world to include public speaking and writing, to educate the public about service dogs and F.A.S.D. Each time I give a speech it becomes a little easier to disclose that I have F.A.S.D. and I become a little less angry.
To say I have dealt with my past and have moved on would be dishonest not only to the reader, but mostly to me. I am dealing with it and probably will for the rest of my life. I still have nightmares that awaken me and I find that I have been crying in my sleep. Sometimes I still wake up hearing my own screams and I still occasionally wake up with nausea. During the winter months, I still need to take medication for anxiety and depression and now for high blood pressure as well. I am however, happier than I have ever been in my life, and this is an enormous statement in itself for me to be able to make.
It never occurred to me that one day I would be the age I am (53) and have experienced all that I have without having been incarcerated or hospitalized in a psychiatric facility. I think somewhere along the line I just assumed I would die early and be spared the experience of growing older. I certainly had no idea the effects of F.A.S.D. would be as far reaching as they have been and still affecting my life even now!
I seriously feel like telling my Doctors that we are no longer on speaking terms as they never have anything nice to say to me anymore. Instead I get a list of specialists, blood tests and MRI’s that need to be done and why. Lumps here, bumps there, a diseased organ, wait there’s another one and by the way why didn’t you tell us you had Tuberculosis when you were younger -what?!
According to the CBC ‘Of over 260 questions pertaining to conditions in 25 areas, such as hearing, autoimmune or cardiovascular disease, they found that people with the disorder (FASD) experienced health problems at a rate that was anywhere from two times to more than 100 times higher than the general population.’ (2)
The frustrating thing is most of my diagnosis could have been prevented had my donor not decided to drink while pregnant with me. As result my life expectancy is shorter and I feel robbed. I feel like I am constantly on a deadline to accomplish everything on my ‘bucket list’. I’ve had many individuals ask me what I could possibly have on a bucket list since I have accomplished so much already? My list is extensive and somewhat demanding but I figure with my children grown I should have the time to check everything off except that some of my desires are rather involved and time consuming – time I may not have. I have recently been diagnosed with Chronic Lymphocytic Leukemia and stage three Liver disease.
I sit back in shock sometimes and wonder when the hell did I grow up? I didn’t notice it at the time but it seemed to happen without me, I certainly don’t feel my age. I have become a mature responsible adult when everyone said I wouldn’t amount to much. Despite my own efforts to remain forever young I have aged not so gracefully and suddenly my body and I are not getting along. I am used to having arguments with my brain regularly but now these arguments include my body as well. Occasionally it will decide that we are not moving today and I have to talk it into at least making it downstairs, preferably with clothes on. I snap, crackle and pop with the best of them just putting on pants and walking any great distance leaves me winded and sweating profusely.
I am unafraid of my own mortality and find it comforting that my children are grown and are making lives for themselves. When my time comes it will not be a typical funeral but a celebration filled with music and much laughter (I hope!). I have the arrangements made and everything taken care of but I am still not ready. I continue to cross items off my ‘Bucket List’ and try to plan my retirement instead.
To sum things up, I think I have had an extraordinary life and although there are things I wish I could change, I made it and proved all the nay-sayers wrong. I have developed and built a successful company, with an excellent reputation in my industry. I have helped countless people navigate mental illness and assisted them in becoming independent again. I have furthered the discussion and information on F.A.S.D. and begun an anti-drinking campaign that I’m hoping will be picked up by more bottling companies. Finally, I have finished a book which was one of the most difficult things I have ever done. It is currently in the publishers’ hands and I hope I will clear up some misconceptions about F.A.S.D. and explain what life is like for us in a way that is comprehendible by all.
If anyone understands what it is like to grow up with a debilitating diagnosis, it’s Elizabeth Baker. Against all the odds Elizabeth has built the life she wanted despite being diagnosed with Fetal Alcohol Spectrum Disorder and Post Traumatic Stress Disorder. Elizabeth is an engaging, entertaining, and powerful speaker whose message about ‘Focusing on the Positive’ is clear, insightful and most of all, important for anyone diagnosed or living with a child with F.A.S.D. She clearly understands the desperation faced by many individuals with F.A.S.D. and addresses the nuances of behaviors associated with the diagnosis. Elizabeth is able to offer hope and clarity to those navigating the precarious life of a F.A.S.D. individual with compassion and humour.