I had been sent to UCSF after 4 years, 5 doctors and a Multiple Sclerosis diagnosis. I took the MS diagnosis seriously but my symptoms were slight I simply went on with my career path and being a single mom. The last doctor did a new test (EMG), on my first visit, and said "I don't think this is MS Tammy." I was relieved and asked "then what do I have?" She had said that she preferred I go to UCSF before giving me what her suspicions were. Relieved, I grabbed a girlfriend for a fun day in San Francisco.
I sat on the white paper, covering the exam table, when combined with my HUGE paper gown made loud noises every time I moved. The room was tiny and I felt it getting smaller as I grew impatient. UCSF was apparently a teaching hospital so I was examined for an hour by a resident, then an hour by the head neurologist. My poor friend was still in the waiting room as I grew anxious to get this done.
They came back into the room together. I noticed the young resident was more serious and had a hard time making eye contact with me, as he shrunk into a corner. I found it funny to see his demeanor change in front of his boss. The head of neurology was not scary to me but he was very gentle and caring when he spoke. He said "Tammy, after examining you and your previous records we have concluded that you don't have MS, you have ALS."
All I heard was no MS but when it sank in I asked "so is there a cure for ALS?" and he looked down and said softly "no, there's not." "Will I get worse?" I asked anxiously. He replied reluctantly "Tammy, ALS is a terminal illness." My mind could not connect no cure and terminal but my body did, as I felt flush with anxiety. I looked him in the eye and strongly asked "how long?" He said "that's hard to say, but based on the last 4 years you have 7-10 years, including the 4 years." My mind raced like a fast moving slide show. Jumping from my young girl's, to an unfit ex-husband and my career. I took a long deep breath.
Looking at the very uncomfortable resident, then back to the doctor I blurted wearily "how will I die?" My new doctor, who I found out later was an ALS specialist and would get ALS in 2004, tried to avoid that question. I said "listen, I have two young girl's at home that need me, so I need to know now how this will go." He again reminded me that I was given a lot to process and on my next visit we can discuss questions. Almost too calmly I said "no, I need to know now."
All he would say is all my muscles will weaken making it hard for your body to function. I'm not sure what I said after that or even what he said, but I found my body went through some sort of acknowledgement and goodbye. I went to get my friend with mind racing and body moving on its own.
I said "I'm so sorry that took so long" and she jumped up asking "well?" I must of looked zoned out but said sarcastically "well it's not MS" and she smiled saying "what a relief." As we walked down the hall she said "Tammy, where are you? anxiously she asked "what did they say?" I replied calmly "I'm going to die."
I insisted on driving home, an hour away, but I don't remember the drive or anything I may have said in the car. I needed to figure out how to tell my babies, I needed my babies.
May is ALS awareness month. I chose to write about my biggest life changing event, but I'm happy to report this event happened 15yrs ago. 15 cases of ALS are diagnosed every day in the US and most live only 2-5yrs. You become trapped in your body, losing every function except sight. Your diaphragm will, in the end, cause you to suffocate your mind fully aware. I'm on a campaign to have my friend's pledge to educate one person who does not know ALS. Having that friend educate it forward. Do you know ALS?