By Jenny Chissus
This November 4th, I had the honor to sit with my brother Peter – the father of the bride – at Chelsea’s wedding reception. To understand the real significance of that, here’s a little history.
My brother was diagnosed with ALS – also known as Lou Gehrig’s disease in September 2009, after a year of wondering what was going on with his speech. He was having a difficult time formulating words, and at first, his speech resembled someone who had too much to drink.
Before we knew his diagnosis, I remember one conversation we had on the phone when we were struggling to communicate, and I felt bad that I couldn’t understand his words. Peter kept saying “Jenny, this isn’t so bad, so my speech is slurred a bit, I have friends with serious diseases, cancer or other horrible things. It isn’t so bad, it is still me, I just talk funny!”
Peter has always had such a great outlook and positive attitude that is contagious. He is and always been a light when he entered a room. Even with this awkward speech situation, he was still upbeat and an encourager to others.
In addition to his slurred speech, Peter was having trouble with stability, and had taken a few falls. Our parents were at my home in Seldovia, Alaska that September when we received the call from Andrea that Peter had been confirmed to have ALS. I remember our mother on the phone sitting in a chair facing the window looking out towards Seldovia Bay as she heard the news, and holding her head when she got off the phone. Unable to speak, she sat there in her quiet thoughts, dealing with emotions no mother should have to process. I don’t ever remember seeing my mother with such a sad and broken heart.
I was able to go visit Peter when we both went to Bainbridge Island for our father’s 80th birthday, in November 2009. It was a nice visit, though the walk I took with Andrea one day laid out the full gravity of the situation, as she let me know that he was already struggling with eating, and choking some as is expected with this disease. Peter was using his iPhone to communicate a bit, but he was still talking, and when we couldn’t figure out what he was saying, Andrea was great at translating!
My next visit was in September 2010, when I was able to go to California for a week. He was driving still, though it was getting difficult to turn the key in the ignition. He was eating, we enjoyed lunch out at In & Out burger (one of his favorites) together and he helped me pick out a new outfit at Fashion Island. He worked as manager and buyer for Nordstoms for many years, and has always had a great sense of style! We also took a walk down to Crystal Cove together, looking for glass. Peter was using the iPad and iPhone to communicate, there was no speech left.
I had a chance to go see Peter again in April 2011, and this time, two of our kids, Devin and Marina were able to join me! Peter was no longer driving and was really confined to his wheelchair.
Peter was also just getting used to his new Eye Gaze to communicate. The iPad was still on his lap, but it was getting very difficult to type and control his fingers to make the fine motor movements required to type effectively. So many mistakes made the process very difficult. Another thing he continued to have trouble with was that he wanted to spell out everything, using big words like “exceptional” instead of “great”. I tried to encourage him that we would rather hear more from him than perfect or eloquent speech. Try the “texting” language, like “c u l8r”. But he said he felt that was “cheating”, and I understood.
Peter has always been a vocal guy, a real communicator, and this disease has completely altered his ability to express himself and be involved in the conversations around him. By the time he typed something, often we had moved on to other subjects, and then I would catch him erasing a whole sentence because it was just too late.
In spite of the difficultly communicating, we had a great visit! During one conversation he said “Jenny, don’t have regrets, I have none, I am at peace, I’m good to go when that time comes.” I also remember a time when I was out at the poolside and he was looking across the pool. I remembered playing gin at the picnic table with Peter the last time I was down (something he can’t do anymore, going up the steps to that table or even holding cards) and I asked him what he was thinking. He just smiled and typed with his Eye Gaze “I just feel so blessed!” It came as a bit of a surprise, though it shouldn’t have, but I was thinking about all that was lost, and he was thinking on all that he had! Just like Peter!
This most recent visit, for Chelsea’s wedding was a busy few days. Our parents were there too, as were a host of other family and friends of the bride and groom’s families. This was the most special wedding I’ve ever witnessed. Peter came down the aisle, pushed in his chair by his son Ryan, and Chelsea was holding his hand. Peter had the biggest smile, so proud, and so happy for his daughter, it took everyone’s breath away! At the end of the ceremony, after the bride and groom had walked down the aisle, as Peter and Andrea left the chapel, they received a standing ovation of love and support, it was incredible!
Andrea had asked if I would sit with Peter at the reception, as she was going to be so busy with all the guests. I happily obliged. I didn’t know what I was up for. It was one of the most humbling events I have ever witnessed. I know it was very important to Peter and Andrea that this disease played a very small role in the celebration, though it was hard for it not to be a part of it all, as Peter was the bride’s dad!
As I sat there with him, a constant stream of guests came by to visit with Peter. Each visit began with a tender hug, a soft touch of his face, a kiss on the cheek or a loving pat on the back. Then, because Peter is unable to speak, the friend would kneel down to talk to him, holding his hand or gently leaving their hand on his shoulder. They would tell him how great the ceremony was, how AMAZING his smile was coming down the aisle, and then the love would really start to rain down. Time after time, Peter’s friends came to share with him just how much he meant to them, how much they love and admire him, how truly he has impacted their lives in a positive and impressionable way, and how proud he must be of his family. Whenever they would mention how beautiful Chelsea looked, and what a wonderful young woman she has become, and how proud he must be, it brought tears to his eyes. Men and women alike would hold his hand and look lovingly into his eyes with a gentle tenderness I have rarely seen.
Peter worked hard to continue to use his Eye Gaze to communicate with these guests that came from far and wide. He would type up the whole line with something like: “Thank you so much for coming, it means a lot to us that you are here, We really appreciate you guys.” He could have had pat answers to click once, but no, each visit deserved a complete acknowledgment. Many folks took photos with Peter, and at the time it seemed like a little too much attention for Peter when it was Chelsea’s day. But for Peter, many of these folks he may never see again, as they had traveled far for the event, and everyone realized that this disease typically doesn’t leave much room for a future. This was many friends chance to say goodbye, to make sure Peter knew just how much he meant to them. It was also Peter’s opportunity to say thanks and show love to his friends and family.
Normally, the bride gets to have a dance with her father, and this was not to be for Chelsea and Peter. The family had prepared a wonderful video of Peter and Chelsea from her birth to today, with a dance together when she was just 3 or so to the song “I loved her first” – it was perfect! (You can view it here) Peter and Chelsea sat together on the dance floor and held hands and watched the video together with the entire party. Then, our dad took Chelsea out on the dance floor for the father daughter dance – for his son. It was very moving for everyone there.
The celebration was full of happiness, joy, youth and energy! But mostly, it was packed full with the real stuff. LOVE, the kind that encourages, is patient, and kind. It does not envy, it does not boast, it is not proud. It is not rude, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. This kind of Love does not delight in evil but rejoices with the truth. It always protects, always trusts, always hopes, always perseveres. From the blissful love of a young romance to the kind and patient love of a father who cherishes his daughter, to the protective, faithful and hopeful love of a wife with a very sick husband, to the treasured love of friends and family, we were surrounded with love!
This time spent with Peter during these past two years has been an experience to remember, and it continues to be a lesson in love, and a window that offers me an important perspective on life that is invaluable and that I will treasure forever.
I am so thankful that Peter and I have been able to have these times together, though I’m still selfishly struggling with the knowledge that we will not be growing old together, swapping stories of grandchildren and spending our later years as siblings. It just never occurred to me that he wouldn’t be there. My heart is breaking.
I know there are a few Seldovian families that have dealt with or are facing the pain and sorrow of a family member or dear friend with this horrible disease. I would encourage you to visit Peter’s website here for inspiration, hope and encouragement.