Your body is the church where Nature asks to be reverenced. ~ Marquis de Sade
Dispelling the Cultural Phobia Around Death
When faced with the inevitable challenges life brings, I have tried to meet each trial head-on, once I was able to tap into the hard-earned resources I have acquired through the years. The diagnosis of progressive multiple sclerosis in 2003, presented me with the greatest ordeal I would have to face in life. Mysteriously, when the symptoms began in the late 80s, I instantly grasped the profound level of disability that would eventually evolve from this illness. This resulted in the greatest fear of my life, yet I slowly began to move forward with the willingness to simply not know.
I and my family are coming to terms with the shortening of my life that used to be an abstract concept, but has become very real recently as my organs are beginning to shut down. Little did I know when the symptoms began, there was no treatment for this neurological disease. Meeting my death at 64, has presented my greatest challenge as well as my greatest opportunity. There may be no treatment for many of the these devastating neurological illnesses, but we ARE developing options to meet an inevitable and sometimes premature death, with more compassion, awareness, and humility. As our culture begins to meet death with greater acceptance, we are better able to care for ourselves and for each other. In doing so, we will be better able to meet our final transition with Grace and awe, knowing we are coming face-to-face with the Sacred.
Meeting the Unknown
When I recently realized my organs were shutting down, it took a while for my mind to grasp the significance. My modus operandi for meeting each physical challenge has been to just keep moving forward. Most of the acute obstacles to moving forward were in the form of injuries that had to be addressed immediately. Concurrently, there was the constant background noise, the signs of a continual downward trajectory in functioning. Injuries were easier to manage, because they had: the initial injury, a recovery time, and then finding a new baseline. Functional decline was more difficult to deal with. I was continually strategizing: being vigilant to avoid further injury, listening deeply to my body to what was wanting to be heard, and attending to the changes required. Due to the efficacy of this strategizing, I, and my beloveds, had become lulled into a form of denial that somehow strategizing could actually keep my body going, ad infinitum.
At this sacred time of shutting down a vibrant, generous, and loving life, I have begun my life review, which is a common practice once the shock and grief abate. Looking back, I am aware that I have lived a good life, yet as with any life well lived, I have also made many questionable and downright poor choices along the way. However, with this broader perspective, I am realizing that there really are no mistakes. Each supposed mistake was a learning experience that provided an opportunity for acknowledgment, forgiveness and led to more educated choices in the future. For me personally, it is about discerning how to live my life with greater integrity, authenticity, and grace as I move toward the doorway we call death.
It was merely ten days ago when it became obvious that my digestive system could no longer process foods as it had. Concurrently, my appetite plummeted and it was clear where I was in the trajectory of my life – that I was facing my death. I began to grieve acutely, revealing an understandable level of denial. I am aware of the many times I told clients that some denial is necessary during times of great change. I recognize that I could not have lived such a regenerative life without this ability to compartmentalize. My body was no longer wanting the fuel that would sustain it, so I knew my days were being drastically shortened and that I needed to consider my options carefully.
The Many Options Open to Us Now
Since Colorado passed the end-of-life options act last November and I had gone through the arduous process of securing the prescription, I had the comfort of knowing I had the safety net it afforded, should I begin to suffer needlessly. Another option would be to do V-SED – voluntarily stopping eating and drinking, a process my body had already begun. Although not eating felt voluntary on a certain level, I knew in my heart of hearts that if I were to live in full integrity, it would mean following the direction my body was leading. MAID and V-SED are both viable options, but they just felt too abrupt for this body at this time, given my lack of pain and suffering, at least at this time.
I knew my soul was ready to go and I wondered what it would take for the rest of me to let go and follow. My body was already beginning the process of letting go, but my mind had been strategizing for many years in order to live alone with this condition that demanded continually being in survival mode. Rejecting food appeared voluntary on the surface, but what I knew internally and was afraid to admit, was that it actually was involuntary and I felt to force it would be out of integrity. I knew my soul was ready to let go, to move on to my next adventure of going Home, but I felt conflicted, because it would cause others so much pain. Was I betraying my beloveds? Was I betraying my body? How could I possibly share this with others and feel their grief along with mine, when each of ours was so raw?
As I am sitting with the predicament, a new option has appeared. I could eat and drink only when there was the desire and open to my body’s natural timing. I could find the courage to completely let go of control, and see how this new way of being could serve me (and also serve others). Taking this option meant suspending any sense of knowing and opening to my loved ones’ love and generosity when I am the most vulnerable! This meant that I had to fully embrace being the recipient of so much love that it would stretch my remaining feelings of unworthiness that I knew I still harbored. To me, receiving love and not feeling deserving represents the last frontier of my arduous and sacred Work.
It is essential to clarify that this slow moving illness that is accompanied by very little physical pain is extremely unusual. If I had unbearable pain, acute cancer, ALS, or if I had less support or fewer resources, I would choose MAID in a New York second, as we said in New Orleans.
Given my propensity to struggle with letting go, I decided to write a love letter to my body/mind in the hopes it can finally relax and let go. Although it is very personal, I graciously want to share this with you, my devoted readers. Thank you for your unyielding support over the past months and years.
Love Letter to My Body
My dear loving body/mind, my precious vehicle for this lifetime,
You have served me well. Thank you for being a body with so much endurance and so much forgiveness. I am humbled at your service.
You have taken so many insults, so much abuse, and you have met it all with so much grace. You have had your bones broken, twisted, forced to go beyond your capacity, but you have served us well.
You grew two of the most amazing children I can ever imagine. And from them came amazing grandchildren and perhaps there will be more. I, Aliyah’s soul, will be watching, listening, ever giving my two cents, but always loving.
You have weathered quite a curriculum to teach me how to better love and that I am worthy of being loved. The former, I came wired with the ability, but the latter was more hard earned. I guess that is why it’s called a “curriculum.”
You have fulfilled your Sacred commitment to me with generosity and grace – I release you with loving gratitude. You are free to do what bodies do. You have served me to the utmost and I can’t imagine any better body to carry me through this life.
I will not force you to eat when your system does not want to digest. I will not trick your body with medications, I will let you shut down with as little struggle possible. I will help you let go, if your mind pushes you beyond your limits due to the guilt from perfectionism that has plagued you, or an unrealistic belief that you are necessary to lessen others’ grief. I will not abandon you. I will help you let go of needless suffering with whatever resources I have available to me with the same generosity you have afforded me.
Your mind has served me well. It has helped me be the first person in my family to have an advanced degree and use that in service to others. What better joy in life can there be? You have helped me to strategize an impossible curriculum with impossible circumstances. Without you I could not have accomplished living alone unable to move from the neck down for as many years as I have, touching so many lives. I learned to receive love and the greater challenge was I learned to ask for help.
Without my body and mind, I would have left long ago. We did really really well!
It is almost time to completely let go, to scatter joy to the earth, the air, and water, especially the water. We can know that we did what we came here to do. We can let go and let Love!
Weekly, Crestone’s Threshold Choir comes to sing a cappella at my bedside. Here is an example of one of their songs:
51 comments
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May 25, 2018 at 6:32 pm
Marlow sloan
Well, you will do it your way, won’t you?
I would expect nothing less. I love your
“love letter” and the way you separate your soul from the body/mind. Old hat to you, but so insightful to evoke the eternal witness.
I hope it goes well for you. I like your choice.
Much love to you, Aliyah.
May 25, 2018 at 7:03 pm
aliyahalex
Heartfelt gratitude to you, my friend, Marlow. Without you, this could not be possible. Thank you so much. A
May 25, 2018 at 6:37 pm
Anonymous
Ilene, I hope your journey is a sweet one and that we will see each other again in some way or another. You have certainly made me laugh and cry and I love you dearly. I hold our very old friendship amongst my most precious gifts. Your strength and courage is beyond admirable . I love you my friend
May 25, 2018 at 7:49 pm
aliyahalex
Thank you. I don’t see your email or name. I’m sure I love you also.
May 25, 2018 at 7:35 pm
Debbie
Aliyah, I was thinking of you today. I had a long drive and was on some back roads of Virginia. The mountains were glorious. East coast mountains, green, rounded and misty. Unlike your beloved mountains, but they brought you to mind. Your blogs and giving of yourself have opened something in me that isn’t always comfortable, but thank you.
May 25, 2018 at 7:59 pm
aliyahalex
Thank you for your honesty. I actually here that a lot. Not always so honestly.
May 25, 2018 at 9:16 pm
Marilynn
Eileen, I am helped with my own dying by your sentiments about your own. I did not know that you knew your dx so long ago. I am comforted by/in knowing you.
May 25, 2018 at 9:50 pm
Marilynn
Sorry I misspelled your name. You were Alyson much fun!!
May 25, 2018 at 10:33 pm
aliyahalex
❤
May 25, 2018 at 10:26 pm
aliyahalex
Thank you so much. I about it and I tried to heal. Love you.
May 25, 2018 at 9:21 pm
Debbie
That may not have come out the way I meant it. Uncomfortable in a way that made me think about my own journey and learn from yours. Maybe a needed kick in the pants? The thank you is very sincere and heartfelt.
May 25, 2018 at 10:28 pm
aliyahalex
Thank you for saying that. I do have that effect on people. Love you so much Debbie!
May 25, 2018 at 9:30 pm
Doris
What a beautiful song. What beautiful words you have written. I am in awe of your strength and self awareness. You are such an inspiration. I don’t understand why we have disease and why some people escape having to cope with illness and others don’t. I do know you are loved by many. I do know you are truly worthy of that love and more. Perhaps you were chosen for this horrific illness to show others that people can cope and be incredibly strong and loving. I am so sorry that you are going through all this. I am so glad you are not in pain. I am in awe of how you handle life. You are an amazing woman. I am so proud to call you cousin. Love ❤️ you.
May 25, 2018 at 10:32 pm
aliyahalex
I believe we were both chosen and we are contributing love to the world – both of us. I have been thinking about you. Love you, cousin.
May 25, 2018 at 9:36 pm
Gussie
Aliyah, because of all we’ve gone through as a circle of love over the years, and especially because of how you’ve continuously helped me stretch and grow, I think I have enough room inside to hold the pain and sadness of losing your physical presence, which I didn’t think I could hold. On one level I still don’t think I can, but I also know I can, and the space inside to hold everything that comes will grow even more as a result. The gifts you’ve given and that you give just keep opening up inside me.
The gift of who you are is so real, it’s transforming all of us who love you, as we witness your transformation.
I love your love letter to your body. You’ve already lived so much deep forgiveness for your body, I think its final gift of appreciation for you is to show you how to live this letting go part, in rhythm with your soul (as John O’Donahue puts it.)
I’m very happy to know that you know how much I love you, and how much gratitude I have for you.
forever.
Gussie
May 26, 2018 at 8:36 am
aliyahalex
I love that John Donahue Oreference. And I love you so much and I’m so grateful we got to become so close in the last year. And I know we will continue. As you said, FOREVER.
May 26, 2018 at 4:45 am
Cindy Voloshin Smernoff
❤️
May 26, 2018 at 6:15 am
Carol Dillion
Aliya, thank you for sharing your life with all of us. Your words are always so beautiful and meaningful. Sending love your way as you transition. I wish you peace and ease in your journey.
May 26, 2018 at 6:27 am
aliyahalex
Thank you Carol. Much love to you.
May 26, 2018 at 7:41 am
Anonymous
Love, love love to You Dearest Sister. I will always treasure the Dr Seuss book “Oh The Places You’ll Go” you gave me when I moved from Mandeville and we drove the truck all night! Your inscription reads “And I’ll come visit!” I look forward to your visits and have felt so connected with you in heart, mind and soul even though we have seen each other in many years. Thank you my dear sweet Aliyah. I am so grateful for you. Love Always, Rita💗
May 26, 2018 at 7:58 am
aliyahalex
And I am grateful for you and your family in my life and my family’s lives. We always remember you all. I will be visiting, if it is for the highest good of all concerned. ❤
May 26, 2018 at 8:13 am
lanalensman
Aliyah, May you be present to your death so you can experience its full beauty. May you see the radiant light surrounding you. May you feel the immense love embracing you. May you know in the deepest way how much you have been loved in this lifetime, and how grateful others are for the love you have given. May your guides and angels help your spirit lift up and joyfully return to your true home.
Big tears and a wide open heart,
Lana
May 26, 2018 at 8:31 am
aliyahalex
I would love to have your message engraved in my body heart and my soul. I have the feeling that it is. Love you Lana!
May 26, 2018 at 9:43 am
Suzanne
You are my sister, not by birth but by Gods plan. You have taught me well in the past 41 years how to live and now you are teaching me a new lesson that is both beautiful and heartbreaking. Your courage has always been something I admired, actually admired is too weak a word. You are the most courageous person I know and I truly believe that when you leave this world as we know it, you won’t be leaving me. I will be still with myself when difficulty arrises (we both know how difficult that is for me) and listen for you. I love you and hold you in my heart always
May 26, 2018 at 7:51 pm
aliyahalex
Thank you for commenting and the beautiful words. I love you so much and I know we will be connected forever.
May 26, 2018 at 9:55 am
Selene Seltzer
Aliyah… with deep warmth, affection and appreciation for your being and willingness to share your journey with us all. May you know the love and peace and the boundless of spirit you have evoked in us through your example. With gratitude, Selene
May 26, 2018 at 7:50 pm
aliyahalex
Thank you so much for sharing the journey. A
May 26, 2018 at 12:17 pm
Diane R
Dear Ilene, How fitting it is that I found this, your latest entry, in my inbox after Shabbat went out, on my 65th birthday. I am so enriched by having had you in my life, and will continue to feel you with me always. Sending you so much love — Diane
May 26, 2018 at 12:31 pm
aliyahalex
I imagine the Marquis de Sade quote was not the part that was so fitting. 🙂
I will be with you always, for sure. Love to you and your family, especially your mom.
May 27, 2018 at 11:23 pm
DianeR
The quote works fine. 😉 God-willing, I’ll keep celebrating birthdays with you in my heart. ❤️
May 28, 2018 at 6:05 am
aliyahalex
I have a feeling we will celebrate birthdays and more…
May 26, 2018 at 12:59 pm
Amy Schwartz
Dear Aliyah, Thank you , bless you, and may your transition be a joyful one, despite the “ physical release! I hold you in the “ highest” esteem,” Your family and loved ones are the most blessed to have and to have had you in their lives. The legacy of stregnth, faith, love, joy, integrity and authenticity that you will be leaving behind will only grow.
You are SO worthy! I wish that we had known one another better in this physical world, however, the journey of your soul has left an imprint on mine, one of deep love and understanding.
May you have peace, love and all good
With so much love and admiration,
Amy
May 26, 2018 at 1:30 pm
aliyahalex
Thank you Amy. I have loved our late in life connection. I think of you every time the Threshold Choir comes to sing. You would be perfect in one of those choirs that is all over the world. I hope your boys are all well. Love you!
May 26, 2018 at 7:24 pm
Casey
Mom,
Thank you for all of your writing. Thank you for sharing so much. I could not ask for a more loving, generous, and courageous person to lead the way.
I love you.
May 26, 2018 at 7:36 pm
aliyahalex
Thank you my precious daughter. We continue to learn from each other, especially forgiveness. Mama
May 26, 2018 at 7:41 pm
Debbie Eisenstat
Dear Aliyah, Ilene,I am so moved with spirit and love by reading your deepest soul beliefs. We shared a few parallel lines along our path.. You and I having 2 older brothers…..”Curly Hair” oy, only we know.. Hebrew School, Horses,,Emys, and disease… and Im sure there’s more. I was glad to touch hearts again a few years back. If only briefly, I want you to know how much I embrace your courage ,attitude, strength and your sharing as you transition with love, peace and acceptance. love you my fellow Cancerian Always spiritual presence…Moon Child always looking up
xoxo Debbie
May 26, 2018 at 7:48 pm
aliyahalex
I will always remember you July 1. 🙂 I love all of the sharing we have done. Thank you for the beautiful comment. Love you Debbie.
May 27, 2018 at 2:09 am
Bon
Thank you for your very personal life sharing.
Thankful to have worked to give beauty to you 🌸🌻🌷❤️
May 27, 2018 at 6:25 am
aliyahalex
The beauty you gave me lives forever. I met many wonderful women threw you. Thank you for being there in the very beginning when I had the hardest transition and you helped me with caregivers when David left. I appreciate you deeply. much love.
May 27, 2018 at 10:48 pm
Joan Soboloff
Aliyah, You continue to amaze me! I am so grateful our lives touched! Vaya con Dios!
May 28, 2018 at 6:03 am
aliyahalex
Much love to you and your family!
May 28, 2018 at 8:46 pm
Penelope
Wesley and I are thinking about you, and sending so much love.
May 28, 2018 at 8:56 pm
aliyahalex
Thank you so much, Lauren. I’m receiving it from you!
May 28, 2018 at 8:48 pm
Lauren
That last comment was from me, Lauren. I’m not sure who Peneplope is! Act, the internet moves in mysterious ways. But in all seriousness, we are sending our love and have you on our minds and in our hearts.
May 28, 2018 at 8:58 pm
aliyahalex
I saw your email address at the bottom. 🙂 whoever Penelope is, she just got a very loving response from me. 🙂
Much love to you and your family and to Wesley’s father. A
May 31, 2018 at 5:16 am
Laurie Mowrey
Scott and I are forever better people with you in our lives! Thank you for all of your wisdom and love. I will forever remember these words and their comfort when it is my time❤️
May 31, 2018 at 6:03 am
aliyahalex
Thank you so much for your comment. that means a lot to me. You both will always be very dear to me! Love, me
June 3, 2018 at 8:28 am
Larry Joseph Calloway
I do not know you except by this sacred last message, which was forwarded, but you perhaps recall my daughter. My deepest gratitude.
June 3, 2018 at 8:39 am
aliyahalex
I think I know who forwarded this to you and I know your situation as best as I can. I think of your daughter often. Thank you for reading my essay. We have many mutual friends. Thank you for reaching out.
You might read a previous essay titled “The mountain Metaphor.” Often when we find ourselves in these very challenging circumstances, I believe we are very courageous souls on an accelerated path. I have told your daughter this in the past and I would repeat it to you, as well.
I hope you have much support on your rigorous journey. A
June 4, 2018 at 8:51 pm
Heather
So beautiful, sharing so much love of others and yourself is an amazing gift.
June 4, 2018 at 8:55 pm
aliyahalex
Thank you. Love you.