The emotional pain can and does manifest itself in various ways. It can be so overwhelming that you feel frozen in time, like you are on the outside of life looking in at a world you no longer feel part of. At times you feel like you are having an out-of body experience — going through the motions of life, but you are not really there.
People think those of us on the autism spectrum don’t have emotions, yet the complexity and depth of emotions I’ve gone through after my mom died is massive. It is overwhelming and consuming. It can depend on the depth of the relationship you had with the person who died. It can feel like a part of you dies, too. You might never feel the same ever again.
One day I was watching an interview with Olivia Newton-John on TV. I hadn’t seen her in many years. Had they not had the banner across the bottom of the screen with her name on it, I would never have recognized her. Her entire face looked different. Then I realized what it might have been. She welled up with tears as she started talking about losing her sister to cancer. She proceeded to say they were extremely close their entire lives and she was her best friend. Olivia’s eyes told the depth of her grief. I could see an empty, gnawing pain in her eyes. The sorrow, the feeling of being so very lost. Her voice trembled, as did her entire body. I recognized it clearly. I’d been living with it for seven months at that point. It is a struggle to write about it, because it causes me to relive the most intense pain all over again.
One thing is for sure. As a human being, at some point in your life, you will experience grief. No one is exempt. Even when it is expected, the pain is not lessened. And worst of all, there are no words that make it feel better. But you can be comforted by listening to others talk about their grief because then you don’t feel so alone. You realize other people are experiencing all the things you are. Maybe not on the same level of intensity, but some degree of it.
There are, of course, factors that can affect your level of grief. The biggest factor is the intensity of the relationship you had with the person who died. If they were the most significant person in your life, you will experience emotions you never even dreamed possible. I have also learned from two grief counselors I occasionally talk to about other factors. If you had a troubled relationship with the person who died, for example, you might feel a whole different realm of emotions.
My mom was my best friend for 54 years. We were never apart for more than a few days during all those years. We were inseparable. We thought exactly alike. She was on the autism spectrum as well. We could finish each other’s sentences. She was my sole support system and was there for all the good times and all the bad ones. She guided me through thick and thin. I relied on her for guidance, and even though I’d disagree at times, I knew she’d be right in the end. She always wanted the best for me and spent her entire life devoted to me for everything. This, as I’ve come to learn, is not uncommon in the lives of autistic children. I’d call her endless times during the day during every opportunity I had. While I was at work in the operating room, she knew never to call me unless it was some dire emergency.
In earlier years before she became too ill to even walk, we went everywhere together. She taught me from an early age how to savor each day. How to watch a sunrise and drink in the color palate that evolved before our eyes. We’d go on long walks when I was a little girl, and she would stop to pick up a leaf. It would be fall, and all the leaves were in their full glory, bursting with color. She would point out the different shades of red on the leaf, its texture that felt like velvet and all the veins on the back of it. Each leaf was a work of art. When we walked in the snow, she pointed out how the surface of the snow appeared like millions of shimmering diamonds where the sun was shining on it. If it were sleeting, she’d stop and tell me to close my eyes and listen to the sound of the sleet coming down. She asked if I recognized the effect closing my eyes had on my sense of hearing. My hearing became extremely intense with my eyes closed. The sound of the sleet was overwhelming. These are just the tip of our times together.
But no matter what was happening in my life, she was there experiencing it with me, supporting me and advising me. This was the only life I knew. I never had any friends. She was it. I knew the end was coming, but I just couldn’t face it.
A year before her last Christmas she announced to me that she knew it would be her last Christmas. I tried to brush her statement off, but somewhere deep inside my mind, I was worried sick that she would be right yet again. She was. That was her last Christmas. The following Christmas, I dreaded the holidays and wished they’d just disappear.
Being a caregiver can be a physically and emotionally draining job. The last eight months of Mom’s life were a struggle for both of us. She was on home oxygen round the clock, which necessitated having dozens of big oxygen tanks in the house. She used a wheelchair, and if I had to take her out to doctor’s appointments, it was with an oxygen tank on wheels too. I was averaging three hours of sleep per night. I was physically exhausted and mentally drained. I worried about her every second. I did everything I could to help her.
In the final days before she died, she spent her hours trying to give me the emotional strength she knew I was going to need to somehow survive without her. It was really sad, that there she was, dying, and trying to help me to the very end. When I wasn’t tending to her needs, I sat right next to her. I’d burst out crying, my head down, saying, “I don’t know how I’m going to get through it.” Of the many things she said, she kept coming back to making me promise to continue my work of helping others with autism. She wanted me to forge ahead and continue on my mission as an autism advocate. She was so worried I’d lose my focus. But I never did. Despite the tremendous pain and struggling I’ve been going through since she died, I’ve kept my fighting spirit and have continued to move along on my mission. I keep remembering her words and her making me swear that I would keep it all up. That doesn’t mean it’s been easy. In fact, it’s been the most difficult thing I’ve ever done.
In the immediate days after she died, what my body went through is quite difficult to begin to describe. The first day I was like a zombie. When I called the hospice nurse, two of then came right over. They called the funeral home, and within half an hour, two men came with the stretcher to get her. It was all surreal. I was present, but I felt like I was out of my body. I couldn’t stand up as my legs were like jelly. After they took my mom out of the house and the hospice people were gone, that’s when I really broke down. I went and laid on the hospital bed where she died on, and I just cried and cried until I felt like I was going to throw up or simply pass out. As I laid there, I started thinking of how having autism affected my whole response to the event. I didn’t want anyone to touch me. I know other people can be all about hugs during such happenings, but it made me cringe just seeing someone coming towards me, knowing they were going to hug me. I didn’t want to say anything to them not to hug me, but that only added to my pain.
I thought of other autistic people out there who were just like me, having no friends except their parent(s). And what were they going to do when that person dies? I thought of how sad our lives can be without a support system to rely on.
Each morning when I’d awaken after a fitful night’s sleep, my lungs felt as if they were filled with cement. That is truly the best description I can give to describe the extreme heaviness in my chest that was present. I couldn’t get myself to leave the house. I stayed home for the next three weeks. My co-worker whose son is autistic got a bunch of colleagues from work to bring me food during that time. If it were not for that food arriving each day, I guess I wouldn’t have eaten at all. When I wasn’t lying on that hospital bed crying, I spent a lot of time looking out my kitchen window at all the birds. I would go out the front door to put out the various bird seeds in the feeders and on the ground. All the birds and my animals were my therapy.
For those on the autism spectrum, losing a loved one at some point is a reality. Those involved in their lives need to start planning now for who will be the support system for that individual when the time comes. And it may never come for 50 more years. But for whenever it does come, you need to be prepared. You need to have someone who will be there to support you and is non-judgmental. Because we tend to not have endless friends and even other family members, and we need to figure out who that person can be.
Taking this a step farther, if the autistic person is not working, and they are living with their parent, then that parent dies, what then? At least I have a great career and can earn a living. Many cannot and are still living at home. We need to help these people get their lives in order. At the time when they’ll be at a total loss, they not only lose their support system, but they literally lose the roof over their head and their day-to-day life as they know it. Because we tend to thrive on routine, the one thing to help keep you going is to maintain as much routine as possible
Even when it was seven months after my mom had died, I was still in the shock and disbelief stages. I was able to compartmentalize my mind to be able to go to work and do my job. But everywhere I looked, there was a phone, and there was that urge to go “call Mom” to tell her something, check in on her or simply to say hi. Who would ever think that the sight of a phone puts a knife through my heart?
Another issue to deal with is what some people might say to you about your loss. I can write a book about what’s been said to me that truly blows me away. I try to tell myself they mean well, but I wish they would just say nothing at all. I also wish they wouldn’t touch me. Even during normal times, I don’t want to be touched, but then it was even more pronounced.
Your emotions swing all over the place every day, and you can experience multiple emotions at the same time. The best advice I can give everyone is start thinking about who your support person would become should you lose your only support person. Whether it’s a hospice grief counselor, a neighbor, friend, relative… you need to find someone to talk to. As silly as this may sound, even an animal can serve as your support system if you have a pet you love very much. I actually am writing a book about my cat that helped me get through those darkest hours and days and weeks. As I laid there crying, I had her right there with me. She knew something was terribly wrong; you could see it in her eyes. She would snuggle up to me as close as she could possibly get, put her face against mine and stay there purring, providing me with great comfort. I just pray for all individuals on the autism spectrum that they can have a support system in their lives when they need it most.
Something my mom always said was to look for the next day for things to get better. No matter how bad something seems, and you feel like you can’t go on another day, be patient and it will get better tomorrow. She was correct. At that point in time I felt as if my life was over. Each day was simply a struggle to get through. As the weeks and months passed, the ache of her absence didn’t lessen any. Yet something unexpected happened in my life.
Five months before my mom died, I met a fellow named Abraham when he attended one of my support group meetings. We had become immediate friends. Due to unusual circumstances, our communication was limited, yet we still were able to see each other a few times each month. He never got to meet my mom, because she didn’t want anyone to see her in her final months. However, my mom recognized that when I’d talk about Abraham, a twinkle came into my eyes. She brought up his name on the day she died, and said she hoped something would evolve with the two of us. As usual, she was right yet again.
Seven months later, my friendship with Abraham turned into a romantic one. The following Christmas Eve, he proposed to me under a star-filled sky. Nine months later, we got married at the Love & Autism Conference in San Diego, California. Of course I was teary-eyed on my wedding day that my mom wasn’t there to see me getting married. But in my heart I knew that was what she wanted for me, to finally find peace, comfort, and the love of my life.
There isn’t a day that goes by where I don’t think of her endless times a day. Now I look at the positives and remember all her words of guidance to help me make good decisions. She is still here with me, in my heart forever more.
I’m coming up on our first wedding anniversary, and I’m living a happy life I never thought possible. It proved to me to always look to the next day for things to get better.
Image via Thinkstock Images