It has been an interesting time. Our son earned his Eagle designation in Boy Scouts. Our daughter is on a three-day class trip to New York City. In a plan to improve my health I am in the middle of a three-day Cleanse. The insurance company approved my physical therapy, which will start next month. The school year is progressing towards a close, and we will begin the college application process this summer. The standing frame that my husband purchased arrived and I am able to use it for an hour every day. I have been doing a lot more reading, which has exposed me to a lot of encouraging, empowering information.

On that note, I received my daily email from The Daily Love this morning (www.thedailylove.com), and it made me stop and really pay attention:
“To identify with our circumstance as who we are is to give the world far too much power. Yes, reality is here and now; it is not who we are. Who you are is much deeper, far more vast and connected than this simple physical reality…. We are far greater than we can imagine, but we doubt and we allow our current circumstances to dictate our possibilities. This is perhaps one of the greatest mistakes we can make. Our circumstances are here, but they are not who we are…Lessons in life come bearing the gift of wisdom. We miss this gift when we begin to identify with the challenge or set back as “who we are”. You are more than that – as is everyone else on this planet. We are far greater than we can imagine, but we doubt and we allow our current circumstances to dictate our possibilities. This is perhaps one of the greatest mistakes we can make. Our circumstances are here, but they are not who we are. The problems of the world exist so that YOU can solve them. This will be impossible if you think you are your circumstances. You must rise above them and get about the business of adding value to the world. This is how you will set yourself free. And you need not wait another moment to begin.”

I am beginning again today — Thanks, Mastin for the kick in the pants!

This journey is teaching me a lot about the power of my own attitude and forcing me to pay attention to how quickly I react to things — or what brings out my more negative attitudes. My reaction to my family, friends, whatever situations I face during the day can feel out of my control and ranges from open and friendly to hostile and angry. In my current experience, I often do not feel in control of myself, but rather like I have been triggered. I appreciate receiving a blog every day entitled “The Daily Love”, and the author shared this with us a few days ago:

“Life is not about NOT being triggered. Life is about bringing LOVE and AWARENESS to our triggers and moments when our emotions come up. You see, a lot of people I know make the mistake of shooting for a “spiritual bypass” – where they try to deny their humanness – they try to deny their emotions, they try to put their negativity and triggers in a box – and then pretend they don’t exist. And then – over time – they stack up – and BOOM – you have a breakdown, an emotional explosion or other expression.

Having these doesn’t mean something is wrong with you. It means you are human.

…we [The Daily Love] advocate a full acceptance and expression of your human nature. This lets us be fully alive. From there, we also believe in tapping into the higher awareness that is your Soul, that is the observer of the human mind and emotions. We are part spirit, part human. To deny either is to deny who you are. We can’t sit around and just justify our negativity as “being human”. And we also can’t not express ourselves because we are “spiritual”. We need both. This is the beautiful balance that we get to walk as spiritual beings having a human experience.

We all have triggers. We all have intense emotions, both dark and light. These are not good or bad – they are just information. We must allow ourselves to express ourselves; we must allow ourselves to be FULLY human and FULLY spirit. This dance is the dance that allows the greatest version of life to be lived. “

Yes, one thing that this journey continues to be about for me is learning. I continue to learn much about myself, what triggers me, and how to move forward regardless of the triggers. I realize that I am actually here to accomplish significant things — without being distracted by the things that trigger me, including my physical health challenges. Through at-home physical therapy, I am now able to stand with assistance. I also use a standing frame twice daily, which is stretching out my hip flexors and giving me the chance to do some weight-bearing exercises. Although my leg was stuck at a 90 degree bend, my therapist was able to stretch it to 50 degrees! I start outpatient P/T in two weeks, and I look forward to doing more stretching and standing, and eventually — walking!

“Happiness is to be found along the way, not at the end of the road, for then the journey is over and it is too late. Today, this hour, this minute is the day, the hour, the minute for each of us to sense the fact that life is good, with all of its trials and troubles, and perhaps more interesting because of them.”
- Robert R. Updegraff, business advisor.

Just got back from our annual Couples Retreat. It was such a positive experience — spending time with my spouse and some of our closest friends. The kids staying at home with our mothers. In the past, I have shared how this event has left me feeling weird and definitely different — like I am really having a different experience than everyone else. This year, that has not been the case. I was able to approach this year’s event with a very different mindset. Having just completed The Gift of Imperfection for the second time, I began the weekend feeling very centered and content in my own skin, not comparing my journey to anyone else’s. My husband enjoyed golfing with his buddies, the sisterhood was inspiring and comforting, the food was fabulous, and the location was amazing! Tremendous job “S”! Thanks for keeping me in the loop!

I think it can be hard being friends with someone in the midst of a detour like this one. I swing between being very needy of love and support one minute to valuing my independence to the point that I resent getting any help the next. So much of my experience has led me to spend much more of my time reading, thinking and researching about the journey. Along with strong prayer, I have been encountering many ideas/concepts that are new to me, and they have brought me much to consider. I am learning much about life — things that I had never spent much time considering until I began this detour…

I feel like I am making some progress — this past month has been a very busy one — the annual Women on the Move Luncheon was a success, I completed in-home PT, went on the retreat, and we even just purchased a standing frame to get me on my feet again. My foot that has been swollen for months is back to normal. Outpatient P/T starts in a week. (Yay — back on the machines!) I am remembering to appreciate the little things along the way — and to enjoy the great things that we are fortunate to participate in like the Couples Retreat!

Over 100 years ago, Japan gave a gift of cherry blossom trees to the Nation’s Capital. The trees were planted around the monuments and tidal basin in gratitude of and to represent the friendship between our two countries. I have visited the cherry blossoms annually since I moved to this area at the age of eight. They are a supremely beautiful harbinger of spring, and are a huge part of my growing up — I have pictures of myself with friends and visiting relatives over many years posing in front of those trees. I have pictures of my children with a background of those trees. Up until last week, it seemed like winter was going to hold on to our area for a while – keeping things cold and dreary for much longer than the groundhog predicted in February. (only 6 more weeks of winter you say? Hah!)

It is the most beautiful thing to see those blossoms come back to life! Besides signaling the start of spring, the cherry blossoms remind me that life comes back again — every year we watch and wait, often holding our collective breath — until they burst forth, exuding their sweet fragrance and surrounding the monuments looking like puffy cotton candy. (I would draw an analogy to my own health challenges, but I won’t!)

Then there are the parades. As a member of SGI, I have memories of long practices spent marching and dancing around the Pentagon parking lot to a wide variety of music preparing to march down Pennsylvania Avenue representing SGI’s world peace movement in a Cherry Blossom parade. I have been fortunate enough to have marched in many parades in several costumes; kimonos, twirling capes, beating batons, and twirling flags, before the organization stopped participating in the parades. These are golden memories for me now — many years later.

So now what? I enjoy the cherry blossoms from a wheelchair, happily remembering activities from years ago, and knowing that I cannot yet take one step down Pennsylvania Avenue unassisted. Of course, this can change — with enough medicine, physical therapy and positive prayers. I remain determined to win — and just like the cherry blossoms, bloom beautifully again. See you then!

Earlier I wrote about how much I love watching Push Girls on the Sundance Channel. It is a reality show featuring 4 women who are wheelchair-bound due to a variety of reasons ranging from illness to accident. As someone who spends her day in a wheelchair, it was very inspiring for me to see a television show featuring women facing challenges similar to my own.

After today’s session with my physical therapist , I have a new meaning for the term “push girl”. V reminded me several times today that the best way to improve and get back to walking again is to push myself during my exercises, and to do them a few times each day, really helping my body re-learn what it needs.
Pushing myself to stand, develop my core muscles, successfully use my hip adbuctors and doing butt clenches and arm exercises all combine to improve my general health and strength. It does not matter how far I can move each time, I just need to do these exercises every day.

Today I saw how much I have already improved. For the first time I was able to stand almost straight from a chair! I also was able to stand up behind my walker for the first time in a year. How wonderful — and what a great reminder that every thing I do, even though small, contributes to progressing towards my overall goal of walking again.

Pushing myself every day is required for me now – it is a part of my life — I cannot view exercise as something “nice to do” anymore — it is a necessity for me. With the encouragement of my P/T, I am becoming a different kind of push girl — pushing myself to do what I need to do every day. What a blessing — Thanks so much V!!!!

I continue to process my learning from last week’s Super Soul Sunday. Dr. Brene Brown was Oprah’s guest and her comments truly changed my perspective on many of the things I am experiencing on this detour. In her latest book Dare Greatly, she writes compellingly about what living a whole-hearted life looks like.

During the interview with Oprah, Dr. Brown spoke about the significance of joy, and that joy is the most terrifying emotion we can feel. This surprised me, because I would never think that I could ever be terrified by any joy that I might feel. She shared that when we lose our tolerance for vulnerability, joy becomes forbidden. She said that right after a moment of joy, many people begin immediately feeling vulnerable and start dress rehearsing tragedy (I can’t be too happy — what if this is taken away?… sound familiar?)

Another observation she made was that in our culture of scarcity, we tend to look for and value only the extraordinary experiences instead of appreciating the ordinary ones — the ones where if we are honest with ourselves, true joy is actually felt. Based on her research, Dr. Brown shared that when the people who dare greatly in life face the terror of joy, instead of succumbing to fear, they lean forward and cultivate gratitude at the exact moment. The universe responds positively to this — there is nothing to fear.

Hearing this made me think of my own reaction to the joy that I feel over something my children or husband have done, or when I feel really happy about something unexpected that has happened. Although I have gotten better about feeling and expressing my appreciation, when something positive happens I do immediately start thinking about ways to manage my happiness — not feel it too deeply, since it may immediately disappear. I had never realized this before!

Thank you so much Dr. Brown for sharing your incredible research. Hearing it has made me re-frame my approach to experiencing this detour that I am on. I have determined to lean into it — appreciate and feel all of the joy that I am blessed to encounter. I also determine not to devalue any joy that I feel — no matter what!

Please check out this research on the web at http://www.brenebrown.com

It’s been a challenging time. We just started spring break. Both children are tired and desperately needed a break, but they were able to hold on and kept going through the end of the week. The third quarter ended today, so they did it!

I started the week crying – I am in more pain than usual. It’s been physically difficult, and I feel like it should be easier — why isn’t it easier?
I keep remembering advice to “be where you are” — not wasting time wishing you were someplace other than where you are. We really cannot move forward until we acknowledge the place we are, and that can be really difficult sometimes. It is hard when I am not feeling strong and capable. This illness has certainly left me feeling weak and incapable on many occasions, and often something enters my day that helps me dramatically. Lots has gone on this week — our daughter had a large science fair project due yesterday. (She won a first place ribbon!) Our son has been struggling with the volume of homework he has had, and all of the separate projects that he has been managing. (He successfully turned them all in on time — and done well!

Then two things happened. As a part of Oprah and Deepak Chopra’s 21-day meditation, the focus of the other day was: “Reality shifts when self-awareness enters”, and “With awareness I create healthy habits”. Fabulous thoughts of which I needed to be reminded, and to meditate upon. At the end of my session I felt more calm and more centered. I also got some ideas about what I needed to feel better about where I am, and get back to moving forward. More energy work — meditation, reiki, tapping, massage…..any combination of these would help me regain my focus and composure about where I am and how I could advance. I am getting started!

The next thing that happened was a phone call from a very good friend. We talked about how I was feeling and what has been going on in my life. He asked me why I let current my physical limitations change who I am. He said, “You are still the same diva that you were when I met you 8 years ago.” He continued, “You are forunate — you have a phenomenal husband who loves and cares for you and your wonderful children. He does more than pull his weight — handling much more than the average man that most of us know without a complaint of any kind. I attend the MS luncheon every year and I am always inspired by the people who surround you. It’s a wonderful thing! You have the same core group of good friends supporting you, and you are stil the same powerful/strong/regal woman that we know and love. Your detour has not changed who you are.”

What a timely talk! I really needed to be reminded of this. It makes me think of a quote that inspired me from You are not Your Illness:
Lessons in life come bearing the gift of wisdom. We miss this gift when we begin to identify with the challenge or set back as “who we are”. You are more than that – as is everyone else on this planet. We are far greater than we can imagine, but we doubt and we allow our current circumstances to dictate our possibilities.
This is perhaps one of the greatest mistakes we can make. Our circumstances are here, but they are not who we are.

Thank you so much, T. I deeply appreciate having you in my corner. Our discussion reminded me of so much — I had gotten stuck in my experience without taking the time to breathe. Makes me think of another quote from The Daily Love:

“Nobody else knows your reason for being. You do. Your bliss guides you to it. When you follow your bliss, when you follow your path to joy, your conversation is of joy, your feelings are of joy — you’re right on the path of that which you intended when you came forth into this physical body.”

The past week has reminded me that I am on my path to my bliss. Yes, this detour has taken me through some valleys, but I am confident that I will get there, and be no worse for the wear!

The past few weeks have been intense. Lots of losses within my family and within my circle of friends. We have been blessed with long-living relatives, and I have not experienced many funerals in my life since graduating college. However, since 2013 began, we have had 12 deaths in our close circle of friends. Between colleagues, parents and extended relatives, many spirits have transitioned over the past few weeks, which leaves me thinking about life and death, and how many spirits we are blessed to have around us on the other side.

No, that is not what this blog entry is going to be about! Just a little sharing about some of what’s on my mind these days.

Because we discovered through a dye study of my Baclofen pump that it has not been working correctly, my doctor replaced the catheter last week. Although that meant that he had to re-open both original incisions, it was described as an in and out surgery. That was really not the case for me. Turned out that I stayed in the hospital two days, as my doctor titrated my pump. Now, after 2 years of having overly tight leg muscles — so tight that it was hard to dress/move/bathe or even sit, my legs were now rubbery and spaghetti-like and I could not even transfer myself from my wheelchair to the commode. At one point, I was so over-medicated that I had completely blurred vision, and no control of my bowel or bladder. (Not an ideal Diva moment, but we all handled it well!)

We continue to manage the pump and my doc continues to adjust the meds. This is a(nother) challenging time for me, as I am very used to being in charge (at least THINKING that I am!). I do have a lot of physical therapy to go through before I reach my goal of walking unassisted again. This part of my journey actually started in August of 2011, when I was in P/T to strengthen my legs having just received the pump. With the help of some fabulous therapists, I had even been able to walk 20 feet with a walker on several different days. I was deeply encouraged and looking forward to continued advancement. Then WHAM! I got a urinary tract infection. I had no idea how impactful that would be. I had to stop everything until the infection got cleared up. Not only that, my docs explained that with conditions like MS, infections wreak havoc — they can even eradicate any improvements you have made and take you back to square one.

Well, guess what – I feel like I am at square -2

So this morning I find myself healing at home, watching Super Soul Sunday as my husband does his work upstairs, my son’s friends make a video for a school assignment in the family room, waiting for my daughter to return from her basketball tournament, getting ready to start in-home P/T for a few weeks before starting outpatient P/T. I am not stopping — this journey is definitely longer and soooo different than I ever expected. I have mentioned before that although this blog’s title refers to a detour, I accept that this is my journey. Expecting it to be any different than it is would be a great mistake — and would lead me to miss the growth and learning that is waiting for me.

I have been doing a lot of thinking about my father in the last few weeks. He left our physical plane in July of 2005, but I still feel him with us every day. I wrote earlier about finding a list that he shared with us back in Christmas of 1991. I had planned to share these one at a time, but now need to share all of them with the readers of this blog, because I have found them to be true, and very helpful to me at this point in my life. He called them Ten Core Beliefs:

1. Winners are not born, they are made.
2. The dominant force in your existence is the way you think.
3. You can create your own reality.
4. There is some benefit to be had from every adversity.
5. Each one of your beliefs is a choice.
6. You are never defeated until you accept defeat as a reality and stop trying.
7. The only real limitations on what you can accomplish are those that you impose upon yourself.
8. You already possess the ability to excel in at least one key area of your life.
9. There can be no great success without great committment.
10. You need the support and cooperation of other people to achieve any worthwhile goal.

I found these at what I believe is a critical moment in my life. Living true to myself now that so much has changed in my life — that my physical life — at least at this moment — is so very different than I ever expected it to be. That my own expectations of myself have been so dramatically addressed/faced/changed through the crucible of this experience of being diagnosed with MS and becoming wheelchair-bound. I share them because I have learned so much from my father and so much more from these words than I ever hoped to learn. They have encouraged me and many of my good friends. I use them when trying to inspire my children and their friends.

They are rich with possibility – as I write this, I am finding that perhaps they are even the titles of each chapter of the book I am in the midst of writing.

I recently joined a few sisterfriends for drinks – something that I used to do regularly before MS became a constant companion. I had a great time –a lot of fun reconnecting with these wonderful women. I am blessed to have them in my life. It had been way too long since I had been able to join them. It was a really different experience for me this time. I had to schedule a ride there via Metro Access rather than riding with a friend. I could not be as flexible/unscripted as I had been in the past as Metro Access requires a specific pick-up time. I had to leave early. It was a larger group and I have difficulty hearing in large excited groups. Because I am still getting comfortable navigating with ramps and wheelchairs, I don’t often join these friends for drinks/entertainment at each others homes, so I missed much of the inside jokes and past references.

Now, none of this is their fault or even something that they should even worry about. To be honest, I am learning to navigate the changing role that my current health challenges are requiring of me. I am learning to be ok with my need to be different in my roles as a friend, mother, wife, daughter, parent, sibling. Giving myself permission to perform these roles differently — in a way that honors the present moment — is my current challenge.

One of my favorite writers, Eckhart Tolle has written about roles.
“When you don’t play roles, it means there is no self (ego) in what you do. There is no secondary agenda, protection or strengthening of your self. As a result, your actions have far greater power. You are totally focused on the situation. You become one with it. You don’t try to be anybody in particular. You are most powerful, most effective, when you are completely yourself… Whenever you interact with people, don’t be there primarily as a function or role, but as a field of conscious Presence.”
The pathway has diverged — the paths that once felt in synch and parallel are no longer parallel — but were they ever? Yes, they were always unique. Reminds me of a poem that I learned in grade school by Robert Louis Stevenson…

TWO roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood
And looked down one as far as I could
To where it bent in the undergrowth;

Then took the other, as just as fair,
And having perhaps the better claim,
Because it was grassy and wanted wear;
Though as for that the passing there
Had worn them really about the same,

And both that morning equally lay
In leaves no step had trodden black.
Oh, I kept the first for another day!
Yet knowing how way leads on to way,
I doubted if I should ever come back.

I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I—
I took the one less traveled by,
And that has made all the difference.

This poem has a very different meaning to me these days, as my current pathway is much different than I ever expected. I am finding myself on the road less travelled, which has absolutely made all the difference!